Narcolepsy forum xyrem
Common Questions and Answers about Narcolepsy forum xyrem
narcolepsy
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.
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.
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)?
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.
Hi, welcome to the forum, the modalities to improve narcolepsy symptoms are not much but available drugs can help your symptoms. If you are on high dose of modafinil then next you can be put on other drugs which can be helpful in this condition.
Having regular nap for about 20 min during day will help to prevent sleep attacks.
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!
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.
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?
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!
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!!!!!!!!!!!!!!!!!!!!!!
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.
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.
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.
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
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!!!
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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.
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 contract...it 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...
Having a diagnosis of narcolepsy can bring some complications such as getting insurance, possible driving restrictions, etc. However, the truth is the truth and I personally would want to know and be treated specifically for it. But you may want to get your business in order first, such as know what the legalities are in your state, and have an insurance plan in place that is not temporary.
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!!!!
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