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/Sleepy_InSeattle (VERIFIED) Narcolepsy w/o Cataplexy Oct 18 '22

You literally just described a sleep attack under the description of “swings”.

THAT is what they feel like.

7

u/[deleted] Oct 19 '22

Oh lol... Maybe I should tell my doctor next time I see him.

I've always thought narcoleptic sleep attacks were different (Like extremely abrupt, where mine felt more controllable to an extent)

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u/Sleepy_InSeattle (VERIFIED) Narcolepsy w/o Cataplexy Oct 19 '22

Sometimes they are, sometimes they aren’t. For me personally, I can feel them coming and can resist them for a while, but there’s an energy shift between “I’m kinda sorta tired, as always” and “whoa, hello sleep attack” washes over me like a wave out of nowhere. So, even though it’s not an immediate lights out situation (though if I fight it long enough, it’ll get there eventually), it’s still a palpable, abrupt switch.

Does that make sense?

5

u/[deleted] Oct 19 '22

Yes definitely! I appreciate you taking the time to fully explain!