Narcolepsy network xyrem

Common Questions and Answers about Narcolepsy network xyrem


Avatar f tn I too only had to do 4 naps bc it was clear I had narcolepsy. I was prescribed xyrem as well as nuvigil and provigil during the day. My dr had me titration each week starting at the smallest dose which you take twice a night (it's a pain waking up but you get used to it) and then worked my way up to the highest dose. I am also an extremely deep sleeper at night. An atom bomb could go off and I wouldn't hear a thing yet I am exhausted during the day and I definitely need my naps.
Avatar n tn This is not a question, but a comment. My husband has been on Xyrem since the fall of 2005. He now has a considerable amount of central sleep apnea and is being removed from Xyrem to prove that the apnea is indeed coming from the drug. He was diagnosed with narcolepsy, but I have never been real convinced of that because he has always been sleep deprived and depressed. The depression he would not admit until just the last year, and with him it is an "off-limits" subject.
Avatar f tn ve been incredibly stupid and smoked a joint earlier, without putting any thought to the effect it would have on my xyrem intake prescribed for narcolepsy). I had quite a bad reaction (couldn't walk at one point), so it won't be doing it again. I'm now concerned about how long I'll have to wait until I can use xyrem again. I'm guessing the within 24 hours s a massive no no, but how about the next night (48 hours)?
Avatar f tn s done a 1000 sleep latency tests and never had anyone fall asleep during all 5 nap times, fall asleep so quickly and dream too. She mentioned narcolepsy and hypersomnilance. Sometimes I Amos tired in the morning that I can't open my eyes or move. What is going on? I'm very frightened. And, I just got diagnosed 2 days ago with bad laryngopharyngeal reflux. Any thoughts are appreciated.
Avatar f tn I take Xyrem for narcolepsy - my sleep issues are controlled. The cold feeling can happen anywhere it is less than 75 degrees. So it is more a going out thing since our house is 75 degrees and I am comfortable here Leaving the house and going places is the issue, in the summer everyone has their Air Conditioning cranking, and in winter no one has their thermostat set to 75.
Avatar f tn but now when im off the xyrem i have insomnia. which i dont understand if i am narcoleptic? Please give me some advise on what i need to do concerning this med and what i can do if i stop it where my sleep is concerned. When i'm on xyrenm i can stay awake all day, but when i'm off i can not sleep at night and sleep all day and totally exhausted. PLEASE HELP!
Avatar f tn I was recently told I have Narcolepsy with Cataplexy. I am a 74 year old Female and I am taking 20mg of Ritalin SR in the AM and 25mg of Imipram for the cataplexy in the PM. I get about 2 to 4 hrs sleep and the rest of the night I toss and turn. My Dr. told me she doesn't give meds for her patients to sleep. I am concerned about not sleeping and then taking Ritalin to keep me awake during the day.I feel my health will be affected. Is this the normal way to treat my condition?
867808 tn?1239482070 Hi, my name is Valerie and I am 16 years old and I am always very tired everyday. I always get enough sleep, usually about 8 or 9 hours of sleep, yet I always have to take a naps. These are not short naps either, these naps can last from 4 to even 6 hours long. Usually on weekdays because I have school, I go to bed at about 8 or 9 and wake up at either 5 or 6 because of school.
Avatar n tn The combination of this study and my first MSLT nap study produced a perfect pattern for diagnosis of Narcolepsy. Has there ever been a study to look at the coorelation between the 2 diseases. Would many CFS sufferers be classified narcoleptic if they took the appropriate test? Narcolepsy leads back to hippothalmus and lack of production of hypocretin/orexin(?). Seems like all things lead to hippothalmus. Thank you!
Avatar f tn I am 46 yrs old I have been Dx with EDD/narcolepsy and following recent sleep studies with central sleep apnoea. I have been on modofanil for 12 yrs . I am now on maximum dose of this and while it makes life semi bearable I have days where I am so tired it is difficult to describe. I have no idea wht to do next , whether to go back to sleep clinic or go see the neurologist or just soldier on . Seems to be the end result of most interventions anyways.
Avatar f tn I'm here! Xyrem--ghb same thing. Yes tried to get clean I just want more and more and more and more how do i stop!!!!!!!!!!!!!!!!!!!!!!
488264 tn?1226520307 Xyrem is NOT commonly prescribed for sleep paralysis alone. It is mostly prescribed for Idiopathic hypersomnia and Narcolepsy. It is considered a drug so the diagnosis must be precise. Information on sleep paralysis can be found on slep disorder websites such as talk about sleep. I have Narcolepsy and SP is a common factor that I deal with. Sleep Paralysis happens when the brain is kinda disconnected in the order of sleep.
Avatar f tn I have a Narcolepsy diagnosis. However, no one has been able to answer the question about improving the stages I need to. I take Xyrem at night now so that I have two four hours blocks of solid sleep. The first 2 weeks I took it, I felt better than I had in over 10 years. (I was on Xyrem during the last two sleep studies.) After that, I returned to the unrefreshed sleep. I don't drink alcohol and I make sure that I don't eat at least 2 hours before I go to bed.
Avatar f tn I've had fibromyalgia for 5 years now and the insomnia part is out of control. Saw a new sleep doc, and I don't know how I can do what he wants me to do! I did a sleep study - I had, as they put it, extremely light apnea only when I had nightmares. But since my doc wants to try me on xyrem, he said I have to use a bipap - and just found out yesterday that he needs what he calls "full compliance" - which in his words is having it on 7 hours straight, every night, no matter what.
Avatar f tn I have narcolepsy and after taking all sorts of different stimulants I found lortab to be the best solution for my excessive daytime sleepiness. The stimulants had terrible side effects like licking my lips constant, fast heart beat and worst of all my body still felt exhausted so I Would lay down to nap and my mind was going so fast. So I Talked to my Dr and she prescribed me two 7.5 lortab a daily to take half a pill at a time.
Avatar f tn s disease - Severely increased daytime sleepiness and fatigue (diagnosed with atypical narcolepsy/idiopathic hypersomnolence and currently treated with Xyrem) - Joint pain - Loss of appetite (currently helped with Prevacid) - Painful digestion (currently treated with Prevacid) - Acid reflux (currently treated with Prevacid) - Random muscle spasms (twitch-like spasms that have occurred in my eyes, stomach, back, legs and arms so far) - Numbness (which has occurred in my right foot and right arm s
Avatar n tn with the research I have done, it suggests possibly narcolepsy. PLEASE HELP!!!! It is very scary and my husband is starting to think I am crazy!!!
668092 tn?1225464120 I wanna be able to talk with others that have this condition because I feel like no one understands what im going through. I also have a condition called Cataplexy which is very rare and I have narcolepsy. If you wanna learn more about what I have I made a site that explains everything I have and what it is, http://www.piczo.
Avatar m tn I have had the same problem for 6 years.. I have been to no less than 10 doctors. every night it starts ...I make crazy involuntary sounds anywhere from a normal voice to repetitive screaming. at the same time I jerk up or is totally involuntary...all this happens over and over just as I would be ready to doze off. hate to go to bed...i many times just find reasons not to go to bed. when i finally do sleep then i can't get up and have no sense of responsibility...
Avatar n tn He was not sure I had crps though bone scan suggested it, He was talking about possible synvisc injections in 6 weeks, last resort is an epidural. You see I suffer from narcolepsy/cataplexy and pain triggers off muscle tone loss of total body so even upon inserting the injection I would go limp hear everything but cant move., part of the cataplexy.
Avatar f tn ] A few months ago I had a polysomnogram and multiple sleep latency test to test for narcolepsy. I used to think the maybe I had ADD (I am still curious about this), but I'm now starting to think that my attention problems are due to sleeping issues. The specialist I went to said that my results showed that I didn't have narcolepsy and her only suggestion was to try to get on a more regimented sleep schedule.
Avatar f tn maybe i'll have to try those. i take xyrem. It throws me for one heck of a loop i feel so stoned when i'm on it its the same as GHB. But i still cant sleep. I have such a hard time but then i'm tired all day. i need something that will make me sleep. I think i need some heavy meds that will wORK!!!!
427801 tn?1203844562 She is a few years older than me and said she started noticing the same thing when she was my age (23 at the time), and shes since been diagnosed with Narcolepsy. She said the problems progressed into her falling asleep at lights. Then her falling asleep at dinner. Finally after being diagnosed, she was put on a medication to keep her alert (Cylert maybe?) and she says its helped. Well my parents are seriously concerned that I may have it as well.
Avatar f tn I know for myself I have narcolepsy I go into stage 1 for a few minutes and then right into REM. Without having stage 3 & 4 my body was unable to rest and causing me severe symptoms from complete sleep deprivation. I am currently taking Xyrem and like your medication it only works for about 3-4 hrs but it is having an impact and must be giving me proper sleep stages because my symptoms are slowly disappearing. I hope you find the answer you are looking for sooner rather than later.