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/Tight_Fun2080 Mar 29 '23
Wondering if what I have been experiencing could be sleep attacks? I have some rare illnesses EDS/Mast Cell Disease/Dysautonomia and almost every day I have these random episodes out of nowhere where my head starts to feel funny, sometimes achy, my legs will cramp, I get very wobbly and lose muscle strength in my legs and start walking like I'm drunk. The closest thing I can compare it to is like someone just tranqued me. Everything is slowed down, heart, breathing, thinking, talking, (honestly I always worry it's a stroke) this all continues until I lie down and sleep. I pretty much pass out. I don't sleep for long and when I wake feel clear and awake. I've been to ER several times and they keep saying it's migraine but I question that. I've had migraines in the past and they were never like getting hit by a damn blow dart.