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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I was just diagnosed back in may with narcolepsy. Iv been on treatment ever since. I take Xyrem 2.25g during the night and adderall 15mg XR. First i started taking just adderall but then couldn't sleep at all then they put me on xyrem and I found that the combination changed my life in allot of ways. after about 3 weeks on xyrem i felt like it stopped working so they raised my dose, but i got so thirsty so i would bring water with me to bed thats when i realized that if i drink COLD water after i take the dose it kicks in faster and I was able to go back to my original dose 2.25g it takes bout 15 mins to start realizing getting very sleepy but i still fall asleep and have a good night rest so i have been taking the original dosage for 5 months or so and haven't needed to raise it because I drink cold water along with it. So maybe try drinking about a cup cold water right after taking your first dose and drink some more when taking your second dose. It really helps with the thirstiness as well. 
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Maya excellent tip, I am going to try it, how do you keep the 2nd dose of water cold, or do you fix fresh?
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My doctor is still trying to get me to at least try Xyrem but I refuse. With a five year old ADHD child and a husband that works on the road for weeks at a time, I need to be able to wake up. Given how other medications knock me out cold, I know waking up to take a second dose of Xyrem would be tough. Instead, he put me on Amitriptyline and it works great. I take it before bed and ten minutes later, I am in a deep sleep. I wake up refreshed and functional. It also helps my moods and cataplexy. Three for one and it works? I'm all for it. Best of luck to you and I hope you find the treatment that works for you.
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Well what I do is after I take the first dose I drink about a cup of cold water(By the time I take my second dose I go to the bathroom) and after i drink the 1st cup i just refill I put allot of ice and less water in the cup and bring it to bed so by the time i take my 2nd dose the ice is melted and the water is just cold. I hope it works for you.
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