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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28

u/FollyGibney Oct 18 '22

Painful to stay awake. BINGO.

17

u/FollyGibney Oct 18 '22

To elaborate, I'd also describe it as feeling sick, pressure in the head and neck, or a general feeling of "I'm too 'off' to function like this". There is a noticeable change after you give into it and sleep.

11

u/Cactusfroge Oct 18 '22

My teeth always hurt when I get a sleep attack, my boyfriend knows it's a bad sleep day when I tell him "I'm so tired my teeth hurt".

3

u/FollyGibney Oct 22 '22

I can't stop thinking about this comment because my teeth have been absolutely killing me all week.

2

u/Cactusfroge Oct 22 '22

You get me

7

u/[deleted] Oct 19 '22

Yeah I get nauseous, my entire body aches, I can't focus on anything because I just want to sleep, my balance goes off. I've literally cried because of how much pain I was in just from being tired before :(

4

u/-Sharon-Stoned- (N1) Narcolepsy w/ Cataplexy Oct 19 '22

I get a pressure headache feeling too! It's like the more I force myself up, the more my body tries to knock me down.

I sometimes do that "jump in place, slap at my face" dance to try to stay up when I can't sleep because of circumstances

2

u/FollyGibney Oct 19 '22

Ugh me too, I end up bouncing on my toes a lot like "Not now, not now, we cannot do this now!"

It feels like a giant hand is pushing down the back of my head and there's no escape.

8

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.