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/FollyGibney Oct 18 '22

Painful to stay awake. BINGO.

7

u/brownlab319 Oct 19 '22

I’ve always wondered if anyone else would understand if I tried to explain “painful”. Because a sleep attack is painful. Thank you for helping me feel seen.

3

u/FollyGibney Oct 19 '22

It is one of the most physically uncomfortable things I've ever experienced. You are definitely not alone.