I had a consult with a sleep doctor who dismissed the narcolepsy possibility and I was told it’s just insomnia. I tried to tell him of a possible Cateplexy episode that I had at work - but he didn’t seem too interested.
I’ve been under investigation by neurology for this episode, and he led me to the possibility of N1 with Cateplexy. The neurologist didn’t even know my past sleep issues at this time either, so after reading up on it I was amazed.
Surprisingly, this sleep study was ordered by family doc unrelated to my “episode at work” because of my sleep issues as mentioned.
The sleep doctor said I would have had symptoms years earlier of cateplexy…(I’m 36) however; I’ve had insomnia, sleep paralysis and napping/sleepy daily since highschool..sleep on breaks at work forever.
The sleep study showed I slept for 3.4 hours which surprised me because I felt I slept maybe an hour tops. I was told I’m tired during the day because I don’t sleep at night. When I do have good nights, I still have naps during the days..
Anyway- Dayvigo is contraindicated for narcolepsy due to the orexin pathway (Orexin receptor antagonist). I trusted the sleep doctor that maybe it truly was just insomnia, then 4 days later after taking dayvigo to sleep at night I had another full body “cateplexy” attack brought on claustrophobia..
I met back up with neurologist to tell him this. He still thinks possible narcolepsy type 1 with cateplexy - he did tell me he is not specialized in narcolepsy as it is rare, but prescribed a Modafinil trial. He also did say we could do an MSLT- but he also said these are not always conclusive and long wait list.
I’ve had all other testing done (MRI, cardiac, EEG, CT scans etc on these episodes).
Just figured the dayvigo was an interesting link.
I have all these flags screaming at me- but I am just having a hard time accepting it.