Does anyone have or know someone with Narcolepsy?
Wednesday, January 7th, 2009 at
9:09 am
Homesweethome asked:
I have Narcolepsy. I don’t have a severe case. I feel tired all day and I do automatic behaviors. I was wanting to know what you do to help you cope. Medications, anything you can think of. I also have sleep apnea, which doesn’t help either.
I have Narcolepsy. I don’t have a severe case. I feel tired all day and I do automatic behaviors. I was wanting to know what you do to help you cope. Medications, anything you can think of. I also have sleep apnea, which doesn’t help either.
Tagged with: Narcolepsy • Sleep • Sleep Apnea
Filed under: Narcolepsy
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Go to the Mayo clinic website for this. My doctor prescribed a drug called Provigle. It helps with the tired feeling. I also have to sleep with a breathing machine. Not very **** but it beats falling asleep at wrong times. Good luck!
I have had narcolepsy for almost 40 yrs. I’ve been taking meds for it all along and have managed to have a pretty normal life. I don’t have cataplexy but I do have sleep paralysis and nightmares. I also have automatic behavior and a hard time remembering stuff. But I have held a full time job and earned a graduate degree. I take vivactil at night for the paralysis and nightmares and dexadrine for the daytime sleepiness. The best med I’ve ever had for it was desoxyn but the manufacturer quit making it!
I developed narcolepsy at the beginning of high school. Find a sleep specialist and ask if Xyrem is right for you (results are amazing!). It was originally used to treat cataplexy (a symptom of narcolepsy), but now is also used to treat narcolepsy in its purest form by preventing patients from immediately entering the REM sleep cycle when going to sleep, which causes all the sleepiness and the fatigue you feel. Provigil is not nearly as effective, but it works well, especially in combination with Xyrem. I also have a CPAP machine to prevent sleep apnea, which can leave you even more tired than narcolepsy alone makes you. Good luck!