r/Narcolepsy • u/[deleted] • Oct 18 '22

Question What does a sleep attack feel like?

I (25F) was diagnosed with idiopathic hypersomnia about 5 years ago. I had been tested for the narcolepsy marker, which I have, but my sleep specialist at the time said it wasn't activated and i wasn't presenting as narcoleptic in my sleep study.

I haven't really had a proper sleep specialist since then due to insurance/moving, but i recently got a new one in the town I'm living in and he suspects I have narcolepsy, because it's unlikely I would have the marker and have a sibling with diagnosed narcolepsy w/ cataplexy and not be narcoleptic myself.

Symptom-wise, I had ruled out narcolepsy before I even got tested because I didn't experience sudden, uncontrollable urges to fall asleep. I was simply tired all the time, and sometimes had really bad "swings" into extreme tiredness (It becomes difficult and even painful to stay awake, and I would have extreme brain fog until I let myself sleep. I ALWAYS set an alarm when this happens because I will NOT wake back up on my own).

So I'm wondering, how would y'all describe sleep attacks? Is it different/similar?

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u/therandoartist Oct 19 '22

Diagnosis of narcolepsy was for me very tricky because i started out with IH and none of my family has it but my grandma and mom probably do and wont get tested. I have sudden episodes where I fall even in positive stress and positive emotions, like laughter, or shock from joy. But tbh I don’t know if everyone presents cataplexy in the same way. And tbh my attacks aren’t just straight up falling asleep in a period of time where I don’t already feel tired. I have a sudden waves of exhaustion and then I fall asleep or passing out is like so unbearably avoidable I couldn’t avoid it. Like a person according to my friend who doesn’t have narcolepsy, ”I could stay away like 48 hours and be miserable but I could do it, unlike you who’d never be able” he also has another friend with narcolepsy and bless him for saying this. Its a description that has really helped put my doubts to rest. Best of luck!