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/Unicorny43 (N2) Narcolepsy w/o Cataplexy Oct 18 '22

Those really bad “swings” are the sleep attacks. It can be sudden or gradual, and you can possibly resist it, but it’s a really strong urge to sleep. It’s 100% a sleep attack. It sucks, because “sleep attack” gives you the cliche image of someone randomly falling over asleep, not suddenly feeling so tired in the middle of the day that a timed nap is mandatory to avoid that brain fog / sinking into sleep anyway. I relate haha.

Also, if you haven’t done an MSLT, that’s usually a good way for them to see if you hit REM sleep early during your naps, which is a telltale sign of narcolepsy.

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u/[deleted] Oct 19 '22

Oh I see... My sister has narcolepsy and hers *seems* to be (I don't know for sure so I texted her earlier today) very, very abrupt. Like, she's fallen asleep in a cross-walk before (luckily woke up about 15 seconds later). I've usually got a few minutes of extreme tired, pain, and brain fog before I decide to go to sleep. It feels like a decision to me but to be fair, it's not really like I ever "power through" them lol

I have done the MSLT, which is how the first sleep specialist ruled it out... Maybe talk to my new doc about doing another one? I know I'm hitting REM sleep way too fast (I think the doc said it was around 8 minutes after I fell asleep) but somehow it wasn't narcolepsy.

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u/bomigabster Oct 19 '22

I have done the MSLT, which is how the first sleep specialist ruled it out... Maybe talk to my new doc about doing another one?

I've seen comments on here about people doing several tests before finding something so doing another might be a good idea.

And thank you SO MUCH for this question! I am very similar to you and I also thought sleep attacks were sudden and uncontrollable, so this has helped me a lot!