The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
I have been taking Xyrem since it was in research. Then it was a powder that you mixed each night before bed. While it has changed my life for the better. There are some side effects. One is after starting just once I did wet the bed. I had been warned that this might happen. So with proper protection in place no mess. One more side effect is intense hunger after taking the dose. Some people quit the study over that side effect. The price of Xyrem is so high. These are just my experiences everyone is different. But for my narcolepsy I have a new lease on life. One where I can pay attention and stay awake.
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Xyrem works for me. I am able to wake up easily as this medication is wearing off. I notice feeling more rested with less daytime sleepiness. I believe Xyrem helps to facilitate REM sleep during the night, so there is less tendency to go into a dream state during daily activities.
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Xyrem has changed my life. For the first time, I can awaken from sleep feeling refreshed. For the first time, I can achieve a deep sleep. The quality of sleep that I get while on Xyrem is a miracle. Before Xyrem, I used to sleep extremely light all night long, while waking dozens of times and tossing and turning. Between constant REM (dreaming) and spurts of very light sleep, I was so exhausted in the morning and I could barely function during the day. Also, I had a hard time with falling to sleep at night. And trying to maintain a set sleep schedule was nearly impossible.
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I had about 3-years without a full night sleep. Once I started Xyrem, my sense of being tired was gone. I was also taking Provigil. Xyrem was used for the Cataplexy issue and the restless leg syndrome. The downside to Xyrem is that it caused Sleep Apnea, of which did not make my wife happy and after 2-months of using the mask and machine, it was not worth being on Xyrem. Also, it had interactions with other medications.
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This medication has allowed me to have a life now that I am not forced to sleep 14 hours a day. While it does do wonders it still in most cases isn't a complete cure (at least not for me) and I take stimulants to maintain a wakeful state.
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I have found this medicine to be extremely helpful, although I do have some side effects from it. I have been on Xyrem for about 4 months now. I wake up feeling better than I have in years, but I have a trembling feeling (like being very cold) on the inside of my body that lasts for about 1 hour, and my hands shake very badly for about 3 hours. Both of these side effects occur upon getting up in the morning. I will say I can tolerate the shaking, because this medicine is truly amazing.
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Xyrem is life changing. I have been taking a free sample of Xyrem for 4 weeks and now for the 1st time I wake up feeling refreshed and awake. I no longer feel like a narcoleptic.
Before Xyrem, each day I crawled out of bed with an indescribable level of exhaustion and I reached for the Dexedrine pills just to drag through another day.
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After trying almost every sleeping medicine approved in the US, nothing has worked better for my narcolepsy. I haven't had any negative side effects, and I have been treated with Xyrem for more than 2 years. Little by little over the last 24 months I have noticed that my memory has improved, my reflexes are faster, and I am able to work 40 hours a week on my feet, without being abnormally tired. It has truly given me a life I would have never experienced. I was "sleeping" my life away 14 hours at a time.
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