User Reviews for Xyrem oral

I love this medication. My cataplexy has gone from at least once daily to twice weekly. I was looking at losing my job and drivers license. I had a severe reaction to full dose so the doctor has cut it back (at least for now). I just hope the reaction does not come back.

I am finally sleeping at night at 4.5 g twice a night. I don't need the alarm to wake me at the four hour mark, as I promptly wake up anyway after 3 - 4 hours after the first dose. I'd been on stimulants and CPAP alone without improvement. I'm so happy to finally sleep. I'm not working due to the narcolepsy episodes, and informed by the doctor I may need up 1-2 years to recover due to length of unresolved sleeping issues. I thought I had insomnia, but really had sleeplessness at least 2 nights a week for nearly 3 years.Read More Read Less

I was diagnosed by Mayo Clinic at age 16(now 72)so have suffered with narcolepsy with cataplexy nearly all my life. I've taken most of the meds prescribed for it butnothing has worked as well as Xyrem. It is truly a miracle drug for people with this disorder. The cost is now over $5500 per month and I can only afford this as I am on Medicare Part D insurance for seniors. In the five years I have been on Xyrem it has gone from $900 per month to the current price. Since it is an orphan drug, the mfg. can keep raising the price with no limits. I cannot function without this med and hope and pray that I will be able to continue on it for the rest of my life. I feel badly for those who cannot have this kind of relief because of the cost. The side effects are nothing compared to the wonderful benefits this amazing medication provides. Being able to get a good night's rest and wake refreshed is priceless. The control of the cataplexy it gives is better than anything else on the market and I can even watch a funny movie now. You do have to be careful when you take it as it so very powerful and I have had whole body spasms when falling asleep as well as dizziness getting up to go the bathroom. The munchies have caused me to do "automatic behavior" stuff and eat between the two doses with hardly any memory later of doing so. I still take 3 naps a day and drink lots of coffee but my life is better now than it has been for years. Thanks to those scientists and researchers who discovered Xyrem from us who suffer with this mysterious and disturbing illness. You have given us back what we thought we had lost - a life worth living!Read More Read Less

I was at the point where I was about to go on disability and lose my drivers license. Thank goodness for my neurologist to find this medication. I'm so very happy to be able to keep working. My independance. I've been on this medication for 10yrs. It's wonderful to be able to function during the day again and sleep well at night.

I can honestly say been on xyrem for little over yr an half and I have had my battles with it the moods swings and also easily agitated......still there in that boat but overall I say I get the qualities of sleep I need and still having issues with fibro n the CAT .......I think I need an adjustment on dosage , comprehension of thinking still sucks should improve with increased dosage. I am happy on xyrem.....I feel somewhat normal now it's awsome I also take 15-25 mg of Dexedrine...keeps me alert but doesn't help the thought process ...thinking on switching to adderall ....Read More Read Less

I have been taking Xyrem nightly for a year now twice (4.5) a night, along with Nuvigil during the day. I was at first trying to survive daily with the Nuvigil & when I started taking Xyrem at night, all of a sudden, my life has changed. I no am able to work & take care of my daughter & before I was diagnosed & treated, I was being accused of being on drugs, or being unfit as a parent because I would fall asleep literally anywhere at anytime. Narcolepsy + Cataplexy can be controlled almost 100% with Xyrem. The downfall is that without health insurance, it is very expensive...several thousand $$ monthly. The other downfall is the sleepwalking & not dreaming anymore. Other than that, I am all about Xyrem for treatment of Narcolepsy & Cataplexy. Read More Read Less

I'm 28, was diagnosed with Narcolepsy and EDS 3 years ago. I have tried nearly every stimulant prescribed and finally got to this. I take 3.75x2 and it works great. I have done tons of research on this drug. FYI, this drug was used by weightlifters in the 80's as 90's as a fat burner. It boosts your metabolism while on it which is why some people get crazy hungry when on it. To alleviate that I just go to sleep immediately otherwise I'm stuffing my face with junk food. Also, the boosted metabolism causes overheating and sweats during the night. Doesn't happen every night but it does once or twice a week for me. Another important tid-bit. It really has the tendency to reduce inhibitions, hence the "date-rape" abuse. One girl mentioned really wanting sex after taking it, I get that too. It's best just to take this medicine and immediately go to sleep. MOST IMPORTANT: This medicine does NOT give me energy. HOWEVER, it forces me to maintain a repeatable sleep schedule even on weekends. That itself has been the greatest help. I still take two 30min naps daily, at 12:30 and 5:30. I set an alarm so I don't sleep longer. At night I sleep 6-6.5 hours. Any more and I am sleepier during the day, it's odd but true. Too much sleep makes my EDS worse. So all in all, medicine helps maintain quality nights sleep and a consistent sleep schedule. Combined with 2 daily naps my quality of life is as close to "normal" as it ever was. Only downside? Having to maintain that sleep schedule. One wild night out and I am extra tired for the next 4 days, even if I go right back on the schedule. Hope this is helpfulRead More Read Less

male, 28 yrs old. 2'nd week, up to 3gr a dose. so far i only stay asleep 2 1/2 hours per dose. I was recently diagnosed with Narcolepsy, after a couple yrs. of fighting with sleep apnea machine for prior mild sleep apnea diagnosis. I actually have both, but CPAP was useless till xyrem. I constantly woke up throughout the night and couldn't stand the machine. After being encouraged by my wife I went to different docs at a sleep specialized center. Thank God, the PCP doc completely missed Narcolepsy (granted, cataplexia hadnt set in just yet). Cataplexia was the give away, but i thought nothing of it. I'm a laugher, so i just thought things had become more funny... anyways, xyrem has been amazing for me. Time flies at night. Its almost kinda sad that the night seems to dissapear so quickly, as i've gotton used to it being longer. taste is pretty bad, but its still a great deal compared to the narco. Use a little Mio in the water, it helps. Ive read all these reviews a couple times, and they can scare you a bit. Don't let them. If you got the Narco, there is no other option. other sleep meds will not help, they are diff. You'll have to change a few habits, but if you came this far, your probably willing to do it. In the end, just before trying it, i was hesitant because of some of these reviews, and fear of not affording this drug as long as i will need it. DO NOT LET THESE STOP YOU. You will never know how it works for you if you don't try, and thats a nasty regret just waiting to happen yrs. later, wondering what could have been. Second, not gonna lie, its stupid exspensive and you need insurance. saw a bill around 5000, and i paid 12 bucks. Thats jacked up, but thats another post. To the point, I might not always be able to get it, but who knows? The Docs themselves told me that with such upheavel in the insurance/healthcare situation, you just can't really know. So why short yourself now for what hasn't even happened, and may not ever? It worked for me.Read More Read Less

It worked great for about three years. At first I lost weight now I'm gaining tons and now have high blood pressure.

This medicine cuured sleeep disturbance as wellas fibro myalgia and IC. t

I was afraid to try this drug but have to admit it is very effective in controlling the terrible cataplexy. It definately will put you to sleep. I sleep 4 hours take the second dose and sleep 4 more hours and don't use an alarm to wake up. It takes awhile to get to the right dose and I was at times ready to give up but now that I have reached the 9 gm dose at night it really does work. I just hope it continues. I was off work for 3 months trying to control symptoms, I was having 10-20 full body cataplexy episodes daily and now have 0-1 and even if I do have one it is very mild and only lasts a few seconds.Read More Read Less

I started taking xyrem in January 2010 for narcolepsy w/cataplexy. I also have fibromyalgia (diagnosed in 1984). It worked well as far as deep sleep. I slept exactly four hours and after a few weeks did not need an alarm to awaken me for the second dosage. After the second dosage, I slept four hours. I also had a decrease in pain and muscle spasms. I reached the full dosage the first week in April 2010. Unfortunately, as others have described, I had a psychotic breakdown the second week in April. My boss and a colleague took me to the hospital. They had to give me haldol by IV. I was confused, delusional, agitated, and paranoid. However, within 24 hours I was almost back to normal and was released after three days. It was an experience I will never forget, and one that I hope others do not experience. While I no longer sleep as well nor feel rested after sleep, I refuse to even try a low dosage of xyrem. Please be careful and if you experience side effects or others notice changes, seek help immediately, and send a report to the FDA.Read More Read Less

I have bad insomnia. I do not sleep at all. Since I have been on Xyrem, I am able to sleep, but wake 3 times durning the night and have to take 3 doses a night. I have been on it for 3 years. I tried not taking it for a week and was awake the entire week. No sleep at all. I felt like I was going crazy. So I won't do that again. It helps me sleep but I wake up after 2 hours and have to take another dose.

I was diagnosed with idiopathic hypersomnia and chronic daytime fatigue. I got the gold medal from my doctor for 95% brain activity during sleep in my sleep study, meaning my brain was not shutting down, and I never reached Delta-wave sleep. I started the Xyrem and also take Ritalin 60 mg in divided doses during the day, and 250 mg of nuvigil in the morning, but I still have that daytime sleepiness. I have a problem with the Xyrem causing me to want to eat at night, especially sweets. On this drug you are supposed to stop eating by 8 p.m. but it just makes me want to eat, and I have gained back like 70 pounds of weight that I had lost from my weight-loss surgery on this drug, and the interaction with the drug and food makes it not work as well as it should. Does anyone else have this problem with wanting to eat after taking it? Read More Read Less

I have been in the Xyrem success program for 6 years. This has totally changed my life. I now can have a life and be like other people.I now can sleep at night and I get to sleep every night. Which in the past was just plain impossible. I would be awake for 2 to 3 days at a time. No matter what I had tried it never worked until the program. With much support and close monitoring by my doctor. (which I just adore) We got it all figured out. Thank you Xyrem for your success program. It truely changed my life for the better. I hope I never have to go back to where I started.Read More Read Less

it took awhile to get used to taking getting up in the night, but after i felt more revived in the morning

Over ten years ago, I was diagnosed with narcolepsy. I was always sleepy, barely functioning. The first six weeks with Xyrem were difficult, but the side effects dissipated as I adjusted to the medication. I've now been taking this medicine for about 9 years (at the 8g/night dose). I've had two adverse reactions in that time. Once I woke up feeling panicked and with tightness in my chest - that was pretty awful. Another time my husband couldn't wake me up the next morning... He monitored my breathing; I slept an extra 3 hours and then was fine. My hunch is that I accidentally took the medicine twice more in the night instead of once in the night. I now make my two nightly doses and then put the bottles in our safe so I can't accidentally overdose. I do sometimes have middle-of-the-night confusion or mild nausea. These are well worth being able to sleep - without this medicine my brain never shuts off! Thanks to Xyrem, I no longer take any stimulants during the day. I'm still sleepy at times, but able to function and clear-headed. I do have recurring issues with depression and anxiety. These problems started three years into taking Xyrem and after I had my first child. I'm not sure if the depression and anxiety are related to this medication or to the hormonal changes that occur in pregnancy. I take Zoloft and sometimes add something for anxiety during periods of high stress. I took Xyrem during pregnancy twice and both of my children are healthy with no known adverse effects. No guarantees, though - talk to your doctor if you take Xyrem and are thinking about becoming pregnant!Read More Read Less

I have been taking Xyrem for Narcolepsy since 2005, and it has allowed me to continue living a normal life. Prior to taking Xyrem, I was extremely fatigued during the day, and started having problems driving and staying awake in work meetings. I haven't had any adverse side effects and am still able to sleep through the night. I have been lucky enought to have my insurance pay, with just a $50 monthly copay. My RLS has gotten worse and now they want to put me on Miraplex. I am concerned about the possible interactions. Read More Read Less

I was diagnosed with narcolepsy last year and have been taking Xyrem ever since. I used to sleep 12 hours at night and take a 4 hr nap during the day. My grades were suffering, and I felt like I was missing out on college. Since starting xyrem I have only been sleeping 8 hrs, and I wake up refreshed! I don't even need to take a stimulant because the Xyrem is enough. This drug has given me back my life, and it is worth every penny.