Diagnosed with Narcolepsy with Cataplexy in 1977. I started on Provigil after participating in the drug trial study. Would like contact from members who have been on Provigil or Nuvigil(Armodafinil since 1998

A pulmonologist first diagnosed my narcolepsy with cataplexy over 11 years ago, and prescribed NuVigil. I only took it for a couple of months before I started getting bad side effects: small ulcers and tiny blisters throughout my mouth, wild increase in impulsivity/racing thoughts. I'd never had a prescription change my personality/internal thought process like that before... so scary to not feel like yourself! She switched me to Adderall and referred me to a sleep neurologist. Since then I've been on Xyrem and now Xywav for the past 2+ years.

I am 64. Narcolepsy and Cataplexy started in high school at age 17. The phone would ring. I would stand up and fall down at the next ring. I would get up and fall down at the next ring. Surprise triggers mine. I was on a school trip at a wax museum. A person in a gorilla suit pretending to be a statue jumped and grabbed me. I felt I was melting head to toe. I fell and could not speak or move. I was accused of faking as my eyes were open. I was at a MLB game. The mascot started walking toward me. I was thinking not me not me. He bent down and kissed my cheek. I slumped and could not move or speak. He kept trying to get me to high five and I could not. It took until age 35 to get a diagnosis. I took Ritalin initially. When it wore off I felt like I had been run over by a car. Exhausted and every muscle very painful even hurt to blink. I only took it on days I had to drive some where.I get sleep attack warnings. I see silver rain in the sky and it decends slowly. It comes through the windshield. When it hits my eyes I am gone. It takes about 5 minutes. I used to argue with teacher as a child that I could see stars in the day time. I thought it was the sandman throwing sand it my eyes to make me sleep It was just not worth taking meds for me. My employer let me cut my hours. I switched job positions to a desk job. I had been driving clients to medical and resource appointments. I slept in every waiting room. Years later I started on Provigil. Same thing happened , it was just to painful when it wore off. When I am getting sleep attacks and fight it, I get an immediate sore throat. Over time I learned, If I go to sleep immediately I wake up with no sore throat. If I fight it and keep pushing my self, I get the immediate sore throat that gets worse and worse.The next day I can feel that I am getting bronchitis.I always end up at the MD a few days later. I get a breathing treatment, an inhaler and antibiotics. It is like the sore throat tells me my immunity is lowering as I pushing too hard. I did have childhood cancer and radiation. I think I have compromised immunities to begin with. I have tried Armodafinil in recent years. It makes me feel jittery and I can not perform cognitively. It make me feel stupid. I ''ll try to write an email and I will get a "Are you ok" reply. I go back and reread it and it makes no sense. I can remember how to do common things. I absolutely can not drive on it.
I will try to put the seat belt in the ignition. I can't remember how to put the car in gear. I just go back in the house. Then when it wears off I get the beat up feeling, sore muscles and hurts to blink. I also get a night of severe jerking in my sleep.

I have a similar interest in speaking to anyone over 65 with narcolepsy. I am nearing my 50's and am on 120mg of adderall daily. I can't imagine how I'm going safely take my medication when I reach that age or will I have to choose between my quality of life without adderall or keep taking medication that could cause more dangerous health risks. How do people over 65 deal with their narcolepsy?

Hi , hopefully, some other community members will chime in to share their experiences! In the meantime, here's a thread of some community members sharing their experiences with Provigil and Nuvigil: https://narcolepsy.sleep-disorders.net/forums/armodafanil-worsening-eds. Best, Allison (Team Member)