What is Narcolepsy
The main characteristic of narcolepsy is overwhelming excessive daytime sleepiness (EDS), even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy o...
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Xyrem: I'm over it.
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so I really had high expectations for xyrem. I really wanted it to work because it was my last resort and I was hoping I could get off the stimulants. I've taken xyrem for months slowly going up. I've gone up to 4.25 for both doses a night and I feel like it makes me even more groggy in the morning and doesn't make me feel less tired at all. Here's my breakdown.
Advantages: - knocks me out pretty much all night and I feel like I sleep soundly. - Makes it a little easier to get outta bed in the morning. Disadvantages: - it made my muscles twich or shake, especially my hands - I felt so dehydrated overnight and the next morning - I don't like all of the extra sodium from the doses - the extra sodium and dehydration gave me charlie horses multiple nights - I feel like the xyrem made me depressed/in a fog - Did not make me feel "refreshed" or "alert" or like I had a great nights sleep - Xyrem also too away my apetitie which is bad news for me, I lost too much weight. So I stopped taking it for a few days and I noticed that I woke up tons of times during the night like I always used to. My hands hardly shake like before. My apetite is back. I don't feel as depressed. So considering the money and effort it takes to do Xyrem, the benifits do not outweigh the side effects. I told my doctor I wanted to stop and of course I have to make an appointment with him ( which will probably be so he can take 25 more dollars from me to tell me to stop taking it). Ugh. Anyways, I wanna know why people stopped taking Xyrem and if they had the same side effects or worse, etc. I'm just upset it wasnt the "miracle cure" everyone else seems to be getting. Oh well, at least I won't be a dehydrated, anorexic looking, depressed and broke girl anymore. hahaha. Posted on 11/05/09, 05:11 pm |
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Sorry it didn't work out for you! I wish I had the weight loss side effect but my weight has remained the same. Well on to the next miracle drug! 
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I have every one of the side effects you describe, except I not only wake up numerous times without it, I also can;t fall asleep with out it. And to be quite honest I love the and needed the 40 lb. weight loss. So what are you going to take to sleep?
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ive been on xyrem for nearly 3 weeks now and it has changed my life , it does make me twitch alot when it starts to work and makes my jaw go doolally i look like im trying to suck my eye brows lol , and it also makes me feel like i need a wee all the time ,
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For me, Xyrem is likely causing hair loss. I cannot sleep without it, but I do get a sound sleep on it. You may be on too high a dose. I am allowed some flexibility with my dosing, and when I take more than I apparently needed, I feel groggy in the morning.
Xyrem may have affected my weight. I'm not sure, as I was taking a good deal of amphetamines as well, which were making me lose my appetite in a big way. Goodbye, forty-five pounds! I'm gaining the weight back now, though, due to other stuff. 'Sokies, though, I could stand to gain some weight.
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When I wake up after 3 hours of sleep at night and can't get back to sleep, or keep waking up, I take Pasifloraplex. If I get a good night sleep then my cataplexy doesn't get triggered as easily.
Pasiflora-plex was recommended to me by a naturopath and it's meant to reset your biological clock. They're drops you take 45 min before bed, then again right before bed. It makes your eyelids really heavy and I fall asleep and stay asleep the whole night as long as I don't have other things on my mind - cuz then I'm just laying in bed with the heaviest eyelids sooo tired but have other thoughts running through my mind. It takes a few weeks for it to start working and then you can stop taking it when you get tired naturally and can sleep, then as soon as you get the disturbed sleep again, take the drops again.
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I'm fortunate enough that I don't really have a problem falling asleep (unless I can't shut my brain off). I just toss and turn and wake up numerous times during the night but I can always fall back asleep. I know some people use melatonin to go to sleep but I have never heard of pasifloraflex. I will have to look into it just because I'm curious haha. Thanks for the responses guys!
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I just started Xyrem last week. For some reason my doctor had me do 4.5g per night at bedtime the first week - no second dose. Tonight is the first night I do both. I seem to be more alert during the day, however, I've been going back after waking around 4-5am on my own. It's too early to be up - and while I think I should have just stayed up and done something productive- I chose to go back to sleep, so the last sleep before waking was not as deep. However, we'll see tomorrow when I take the full. Now, I had a few headaches and am very thirsty, but I am sure that will go away. I did have one moment Sunday where I woke up at 1am (went to bed at 11:30) and I was gasping for air. Since then, I've been petrified. I live alone. Another girl I met in another forum said maybe my dose is too high. Didn't call my doctor yet, but last night, I took a lower dose and it seemed fine. I am just scared to take both tonight and I don't know why. I am also cataloging my experience on a blog called NarcolepsyDiaries . com if anyone is interested. I will definitely make a plug to this group- glad I found this. Seems like a lot of kindred spirits here! So- what dose did everyone start out at? And is 4.5 as a starter abnormal? I am sure my doctor knows what he is doing, but I haven't seen anyone else yet that started where I am at.
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Holy cow! Yeah I started out at 2.25 for both doses and went
up 0.25 a week. I didn't even get up to 4.5 for both doses. Please be careful especially since you were gasping for air. I wouldn't take both doses until you talk with your dr
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i was prescribed xyrem like 4 or 5 monthes ago. and i still havent taken it .i am terrified . i dont know why.i guess im affraid i will die in my sleep . its good to hear how its working for you all.my sleep dr. has a patient in her 90's on it .and has been taking it for years.one of these nights when i get the courrage im going to give it a try
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