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Living with Narcolepsy

My narcolepsy symptoms are getting worse


#1

Hi, I am new here. My name is Cindy. I am 40 years old and was diagnosed 12 years ago. I get on meds right away and everything was going great, until last fall. My meds stopped working the way they always did and I was wondering if anyone else had noticed that as you get older it becomes more of a challenge to manage?


#2

Hi Cindy, I had narcolepsy when I was in high school but was not diagnosed until about 2 years ago. My doctor prescribed me Nuvigil, and it helped some, but about a few months ago, the meds were NOT working at all. My new specialist said that after a couple years, Nuvigil stops working. Maybe that’s what’s happening to you?


#3

Have you tried anything else? I tried Provigil when I was first diagnosed and that did not work at all. I am on Xyrem now. If that is what is happening, I have an appt with a new doctor in about a week and a half. Hopefully he will be able to figure something out.