u/K8skate

Anyone else almost obsess over researching narcolepsy after diagnosis?

Newly diagnosed with N1, and it feels like constant lightbulbs going off in my head realizing how many symptoms were underlying for so long. Cateplexy only started showing up about 5 months ago, which is what finally pushed everything into focus.

Now I’m constantly reading research, stories, experiences, symptom lists, findings… almost like I’m trying to piece together my entire life through this lens.

But at the same time, I still question everything and second guess myself constantly. Did anyone else go through this phase after diagnosis?

I can’t seem to shut my brain off with researching/thinking about it lately. I do find it fascinating too, but now I keep questioning whether certain things are actually narcolepsy or if I’m just hyper aware of everything now after diagnosis. It seems like I learn something new every day. I suppose knowledge is power, but…it’s complex!

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.

What does feeling “awake” but you’re also asleep feel like? Where does your mind go?

Can you be awake and asleep at the same time?

I’ve read that some people are aware of surroundings etc but are actually asleep as well…, like closing your eyes and listening to the tv, you visualize the scenes? But couldn’t normal people visualize the scenes also?

I’ve read many posts about this; people not thinking they slept but they actually do during the nap tests.

Do you have distant memories that feel almost dream like? Slight muscle twitching but you’re aware of that also? Do you notice eyeball twitches/pulsing - and if so, is that unique to narcolepsy or would normal people also have that)

This is so complicated.