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 08/02/2011 15:55
 
I agree with gavf everybody with narcolepsy will have a different manifistation of symptoms.Before Xyrem i could only manage to sleep for exactly ten minutes a time at night. I would have a movie length dream in that time too. I would the wake at exactly 3am and lie awake for hours, the only time i could sleep heavily was in the day, reguardless of what else was going on around me. Now im taking Xyrem i get between 2 and 4 hours sleep a night and its taken 18 mths to get to this stage. Like gavf said you still dream in the day and it is a blessing not to remember those awful dreams i used to experience in the middle of the night.Xyrem isnt an instant cure it can take a while to get up to an effective dose as the dose is usually upped slowly in order to avoid headaches and nausea.
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 09/02/2011 19:36
 

I know what you mean with the active dreams - mine usually tend to be horrible nightmares, which are so realistic i often wake up screaming out!

You both (Gav and SLEEPYHEAD) say you nap in the day still though you're on xyrem. Is the daytime sleepiness not drastically imroved on the drug then? Do you still find you have to take stimulant drugs?

Thanks again for the info and advice

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 10/02/2011 09:36
 

Once again responses vary so it depends on the severity of your symptoms, which symptoms and then your response to this drug. The drugs at present really form part of a strategy to handle the condition. In Xyrems case I think it is by far best(from my perspective) because it addresses the fundemental issue with my narcolepsy and that was not getting anywhere near enough percieved deep sleep.

Basically I learned over time that the only way I can function properly over a long period is if I'm allowed to nap and wake naturally. So if I have a nap and an alarm goes off half way through, then I'd be falling asleep again not long after(the tiredness returns quickly) as though my body hasn't registered that disturbed nap.

The difference on Xyrem is, first thing you will be more switched-on and able to function more naturally. It is only as the day goes on that you might need to deal with bouts of EDS. So, yes some people do take stimulants alongside Xyrem as part of their strategy to deal with their symptoms - but usually on much lower dosages, therefore minimizing side-effects and allowing for a long-term way of maintianing day-to-day life.

Remember lots of things can make a difference thou. For example if you are like me you may find eating certain foods makes you so tired you start to fall asleep - identifying things like this can help you immensly and limit the need for further drug usage.

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 10/02/2011 16:12
 

Interesting, you say there are certain foods which could effect EDS. My consultant has mentioned this, but I have found it difficult to pinpoint what it could be for me. Do you find it is food high in carbohyrate that makes you more tired by any chance? My consultant also mentioned that other foods that are high in sugar (chocolate for example) can have an opposite effect and increase alertness.

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 10/02/2011 21:59
 
 Modified By SLEEPY HEAD  on 10/02/2011 23:01:36
Carbohydrates do make me sleepy personally but it is also the amount of food i eat, smaller meals consisting of protein tend to help me to function better. As for still sleeping in the day whilst taking Xyrem, i still do, not as much or for as long as i used to but if i have to sleep i still have to sleep.The difference i have found since taking Xyrem is that when i wake i usually escape the sleep paralysis and i can function better. I dont feel ''ill'' like i used to do simply sleepy.
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