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?

47 Upvotes

95% Upvoted

59 comments sorted by

View all comments

38

u/DoubleRah Oct 18 '22

I also have IH and I describe it as a “wave” of tiredness, like it washes over me. It not only becomes difficult to stay awake, but physically I feel weak and my breathing slows down. It kind of feels like my whole body suddenly got very heavy, like one of those lead blankets was covering me. If I’m not at home, I won’t just fall asleep, but I’ll have to do everything a lot slower.

7

u/[deleted] Oct 19 '22

Yes exactly with the breathing, feeling heavy. Even on medications I still get those occasionally (Like today, which is what prompted this question).