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ASKMy pain doctor has suggessted I take it instead of an amphetamine for my narcolepsy. I've done some research but am still concerned about taking it. If anyone has any information on it or has taken it, I'd appreciate learning more about it. Thank you.
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Hi bbnrse,
October 8, 2012 - 6:54pmI am a person living with narcolepsy with cataplexy, and I have been taking Xyrem and daytime stimulants for my symptoms for over 5 years. I also consider napping once or twice a day a part of my "treatment" plan. Hope you're doing well!
Sending wakefulness and smiles your way,
Julie
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The doctor is holding off on me using it until after my next sleep study, which is the 28th of Feb. I'll have results by the second week in March. I'll keep you informed. My next appt. with the pain doctor isn't until the 11th of March. I'll get the sleep study results back the same day I see the pain doctor so I'll keep in touch. Thank you.
February 15, 2012 - 7:47amMy doctor did explain to me that it was a very good and effective drug for the use in narcolepsy without the side effects of the amphetamine I am taking now. I would take one dose as I get into bed, set the alarm for 1 1/2-2 hours later and take the second dose since the half life is so short. It is a liquid you mix up just prior to use. I am not really afraid of it, only concerned about the way it will make me feel. I guess I should think more about that when I start any new med, but for some reason this is a real question I have with this one in particular. I'm not concerned about it's addictive side effects as I was and am with the pain meds I know almost nothing about its side effects. I just don't want to feel wired afterward. or hyper. Just awake. I cannot continue to sleep everytime I sit down! I hate that feeling of zoning out whenever things get quiet or I don't have some activity I'm involved inl I guess I'll try this new medication and see how I react, but if anyone else knows anything about it I'd appreciate whatever you can tell me. bbnrse
February 6, 2012 - 4:08pmHi again bbnrse
I also have heard good things about this medication but agree with you about being cautious. If your choose to try it please let us know if it works for you and if other women can contribute to this thread, I hope they do!
Best,
~Susan
February 9, 2012 - 11:07amHi bbnrse
Thanks for your question!
The medication is question is not a "date rape" drug per se; rather it's a legitimate medication that has been abused as either a rape drug or during parties and raves as a high.
When it's abused like this, it is going to cause trouble, much like other legitimate drugs like pain medications and anxiety drugs. These are also real and helpful medications but when not used as directed, and abused in order to get high or get a feeling from it that one isn't supposed to, then they can be dangerous. This can be said of many kinds of legitimate drugs.
It's important for you to talk to your doctor more about your concerns and since this medication can be abused or misused, you do have a right to be concerned. But remember that your dosage and the frequency you take it, as well as side effects, will be carefully monitored.
I do hope that other readers who may be taking this medication for narcolepsy will read your post here and also give you input.
Best,
~Susan
February 6, 2012 - 10:24am