I suffer from narcolepsy/cataplexy now for 4 yrs, have been on so many medications from specialists?

Hi.. I have only just registered with the web-site, the reason for my registration was to look up some information on certain drugs... What drug are you taking for your Narcolepsy?. I was diagnosed as suffering from Narcolepsy and Cataplexy about 15 years ago... I was given Dexamphetamines at first but they made me quite angry (I was told that I could take as many as I liked but even 8 pills a day did not help with my Narcolepsy problem and did nothing to help my Cataplexy problem either); I was then prescribed 'Provigil - Modafinil' for my Narcolepsy and 'Venlafexine' for my Cataplexy.. Do you suffer from Cataplexy as well? I have found that I don't usually fall asleep during the day any more but if I were to sit in a chair perhaps in the waiting area of the dentist or doctors or perhaps on public transport there is a good chance that I will fall asleep! As for the Cataplexy...

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the drugs do help but I still find that I collapse even if I only 'think' of something emotional!, I don't collapse so often as I used to though and I am usually with someone who understands and can tell when I am about to 'go down' onto the floor... I was reading an article recently concerning driving and Narcoleptics... have you informed the DVLA about your Narcolepsy and do you receive the 'Catnap' magazine?, the magazine has printed various information concerning the drug 'Xyrem', I myself have an appointment at my local hospital to discuss the possible benefits over 'Modafinil' tomorrow and I am hoping that I may be able to try it (I had to have a chest X-ray first - the drug calls for this), at the moment I am taking 9 pills a day and I never even used to take so much as a tablet for a headache before!! Also 'Catnap''s recent issue contained an article that states quite clearly that if you don't inform the DVLA that you have Narcolepsy you could be in for serious problems and huge fines etc... 'Catnap' and the Charity Committee tried to get the DVLA to give an amnesty to Narcolepsy sufferers who had not informed them about their condition but apparently the DVLA would not agree to it, the 'Catnap' article, however, does go on to say that they don't think that people suffering from Narcolepsy who inform them of their condition and who should have informed them when they were first diagnosed will not be prosecuted!, I cannot comment on this as I 'luckily' never did learn to drive but I can totally understand the predicament that Narcoleptics who drive find themselves in... Don't you think that it would be a good idea to 'hang-up' your car keys?, you say that you have had several accidents... maybe the next one will be fatal and remember that you have your son to consider! I could go on for hours about the subject of Narcolepsy and Cataplexy but I will close now... if you need to contact me about anything please do. Regards - Patricia

Hi there I believe you are talking about the drug Xyrem aka Sodium Oxybate. First the reason it got its not so great name of the "date rape drug" is because that is what it was used for. People would add this to a drink at a bar or someplace,of course I am talking about people obtaining this illegally.I have been on it for a few years but finally stopped it as it didn't really work for me. I am one of the hard cases when it comes to meds. But I know at times when it did work I was out cold. This drug also leaves your system within 3-4 hours that is why you have to take a second dose. Personally if you have to be awake at night with your son I would not take this one. I have since stopped it and I also have cataplexy and take Desipramine for that. and have not fallen in over 3 yrs or so. So all I take for sleep is my reg meds and trazadone 100mg. Sometimes I sleep a few hrs, sometimes nothing but feel way better than when I took Xyrem I had bad side effects from it.

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Again this is just my experience and opinion. If you have any other questions feel free to ask. I used to work in pharmacy for over 15 years but I am not a pharmacist. Hope this helped some.