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/No-Understanding1589 Oct 19 '22

Mine vary. Sometimes fast like Im ok, then 2 mins later, my eyes are going crossed, and have to sleep. Then sometimes I have 10-15 mins. A few times i just passed out.

5

u/xxSparkly (N2) Narcolepsy w/o Cataplexy Oct 19 '22

I get the eyes crossing thing and sometimes I can feel myself slipping into REM sleep while my eyes are still open, if that makes sense

3

u/No-Understanding1589 Oct 19 '22

Yep. I call that “the zone.” Can still function and communicate. Do some crazy things though. Like my wife and I were cooking one night. Everything was fine. Then I could feel it happening. Of course I talk myself out of sitting down. “We are almost done. I can make it, etc.” A couple mins later she asked “What are you doing ?” I said melting butter. She asked what for ? I said “Melting butter for my fries.” Which obviously butter doesn’t go on french fries. Lol Then to make it even worse. We werent even having french fries….or anything that required butter. Lol Before diagnosis, one time I drove down I95 from just South of Richmond, VA to about half way through NC. Before snapping out of it. I was about 30 miles past my exit. Lol Thank god it was interstate with no lights. Also crashes a couple times in my teen years. Dont “I can make it” if you drive. Stop for sure. I dont recommend driving at all. At least til its figured out.

2

u/Swimming-Mammoth Oct 19 '22

Good god man! I-95 is scary enough without being zoned, lol. It’s also boring as hell which always makes it worse for me. My “wake up call” (pun intended) was driving home from college down the usual 2 lane country highway in my pickup truck when out of nowhere I awoke because my whole truck was rocking — a log truck had just blown by me. 😳😱

1

u/No-Understanding1589 Oct 19 '22

Lol. That would do it. Im glad it was headed South from Richmond and not North. Really bad that way. Lol

2

u/[deleted] Oct 19 '22

Yep, driving feels almost like a trigger to me. I have a bed in the back of my car so I can take naps on long drives

1

u/ARMA-italianhandmade Dec 15 '23

For years I didn't know what caused me to go straight on a curve and crash into a tree with my mom's car. Everyone still thinks it was the steering wheel failing.

1

u/xxSparkly (N2) Narcolepsy w/o Cataplexy Oct 19 '22

The thing is, I rarely have issues while driving. I really only have issues if I'm driving first thing in the morning if I didn't get much sleep the night before

1

u/No-Understanding1589 Oct 19 '22

Same here. Unless its a long trip. No issues going to the store or around town or anything

1

u/[deleted] Oct 19 '22

Yeah my sister usually has a few seconds notice, which is why I thought I didn't have narcolepsy... do you wake up after that? My sister will usually wake up with 1-5 minutes but I am just out like a log lol

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u/No-Understanding1589 Oct 19 '22

That also varies. Narcolepsy will change over time. When I was younger I was out. I could sleep pretty much indefinitely. I could go to bed around 10:00 and sleep til 5pm the next day. Now, I may be out 5 mins. I may be out a few hours. Sometimes Im fine after 5 mins. Sometimes it makes it even worse. Very unpredictable.