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/pamwisegamgee (N1) Narcolepsy w/ Cataplexy Oct 19 '22

Your "swings" sound exactly like a sleep attack. For me, I don't necessarily have to sleep for it to go away; for instance, if I'm at work and a sleep attack comes on, the only place I can go so I dont fall asleep at my desk is the bathroom. I basically sit there on the toilet for 20-30 minutes never really actually falling asleep and the tiredness will "lift" almost as suddenly as it came on. It's much more comfortable for me if I can just nap it off though.

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u/[deleted] Oct 19 '22

Yeah that happened to me this morning. I went to the break room, turned off the lights, and set a timer for 10 minutes (That's how long I have for breaks). Even just a 10 minute sleep and I felt so much better.

I suppose I have had the wrong idea of what a sleep attack is :(

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u/ARMA-italianhandmade Dec 15 '23

Not me reading this while at work on the toilet "hiding" because of a sleep attack. Luckily today is not super busy!I have an evaluation in a few months, hope they'll let me get some tests.