Armodafanil worsening EDS
Hi,
I was diagnosed with narcolepsy a couple of months ago and have just been started on Armodafanil (Nuvigil) 150mg. I take it in the morning (about 8am) half an hour before food.
For the first few days I had some of the expected side effects (headache, nausea, dizziness) but they were all tolerable. But since starting the meds my EDS has been significantly worse. I went from functioning reasonably well throughout the day as long as I got a minimum of 12 hours sleep per night, to involuntarily falling asleep almost constantly throughout the day. I haven’t been able to work, drive, cook etc as I am simply way too tired. I have even fallen asleep while eating and in the middle of conversations which I have never done before.
I have contacted my specialist’s rooms to try to get an urgent review appointment, but the soonest he can see me is in two weeks.
Not sure whether to persist with the medication or just stop it.
I was desperate for medication to help relieve my symptoms but it seems to be making things worse. I can’t find anything online about anyone experience worsening EDS with this medication. I should add that I can’t take Ritalin or Adderal because of pre-existing mental health issues. So this is really my only medication option.
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 Armodafinil. 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.
Of interest, I was in the Xyrem drug trial. I stopped taking it when I started sleep walking. I fell once and knocked out a tooth and bit through my lip. I had to have stitches. It was my sleep doc who suggested that I apply for disability. I did get approved. I tried to return to work trials four times over the last 23 years.
It did not work out all 4 times. I miss working. I miss socializing. I am blessed to get to spend time with my grandchildren.
Hi, thanks for sharing about your experiences. I took Nuvigil for several months and experienced similar things. I felt like the first month I was on cloud 9 and ready to take on the world. But not long after that I felt like it wasn't working at all.
I have been taking Modafinil (Provigil) for a few years now and it has helped my EDS significantly. I never had side effects and I like how it is a short acting stimulant so I can take as much or as little as I need to get through the day. Maybe ask your doctor about it and see about giving it a try. There is also Wakix and Sunosi that aren't stimulants but help with EDS. I've been on Wakix for several months now and it has also been super helpful.
Best of luck to you!
Xoxo/Zzz, Gabrielle
Hi
, Welcome to the community we're so glad you found us! I'm sorry to hear Armodafanil is making your EDS worse and that your specialists are all unavailable, I'm sure that's incredibly frustrating. I'm hopeful that the community and some of the other moderators will chime in with heir experiences and knowledge. In the meantime, if you haven't already I suggest discussing this with your PCP before stopping Armodafanil. I'm going to link an article that discusses treatment for Narcolepsy, hopefully it will provide you some options to discuss with your specialists and/or PCP when you're able to see them.
https://narcolepsy.sleep-disorders.net/treatments
Wishing you the best! -Aron (Team Member
