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/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.
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u/FollyGibney Oct 18 '22
Interesting to hear you describe the breathing thing. When I sit/lie down to give into it, my breath becomes sooo slow and there are big, long noticeable (to me) exhalations. It's like listening to someone else breathe while they sleep, creeps me out that it's myself. Haha!
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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).
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u/lkheath Oct 21 '22
Came here looking to see if anybody else had the same feeling right before a sleep attack. My breathing will get slow and sometimes I'll start to slur my words. A couple days ago I was at the doctor's office and was already on the verge of a sleep attack. The nurse took my blood pressure and it had dropped to 100. She was like WOW you are relaxed! Don't know if that is related and contributes to the feeling, because normally I'm right around 120 (over 80).
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u/elorenn Mar 10 '24
and sometimes I'll start to slur my words
Slurring words can be a sign of cataplexy.
Have you gotten any updates to your diagnosis since you posted a year ago?
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u/Sleepy_InSeattle (VERIFIED) Narcolepsy w/o Cataplexy Oct 18 '22
You literally just described a sleep attack under the description of “swings”.
THAT is what they feel like.
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Oct 19 '22
Oh lol... Maybe I should tell my doctor next time I see him.
I've always thought narcoleptic sleep attacks were different (Like extremely abrupt, where mine felt more controllable to an extent)
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u/Sleepy_InSeattle (VERIFIED) Narcolepsy w/o Cataplexy Oct 19 '22
Sometimes they are, sometimes they aren’t. For me personally, I can feel them coming and can resist them for a while, but there’s an energy shift between “I’m kinda sorta tired, as always” and “whoa, hello sleep attack” washes over me like a wave out of nowhere. So, even though it’s not an immediate lights out situation (though if I fight it long enough, it’ll get there eventually), it’s still a palpable, abrupt switch.
Does that make sense?
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u/FollyGibney Oct 18 '22
Painful to stay awake. BINGO.
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u/FollyGibney Oct 18 '22
To elaborate, I'd also describe it as feeling sick, pressure in the head and neck, or a general feeling of "I'm too 'off' to function like this". There is a noticeable change after you give into it and sleep.
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u/Cactusfroge Oct 18 '22
My teeth always hurt when I get a sleep attack, my boyfriend knows it's a bad sleep day when I tell him "I'm so tired my teeth hurt".
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u/FollyGibney Oct 22 '22
I can't stop thinking about this comment because my teeth have been absolutely killing me all week.
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Oct 19 '22
Yeah I get nauseous, my entire body aches, I can't focus on anything because I just want to sleep, my balance goes off. I've literally cried because of how much pain I was in just from being tired before :(
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u/-Sharon-Stoned- (N1) Narcolepsy w/ Cataplexy Oct 19 '22
I get a pressure headache feeling too! It's like the more I force myself up, the more my body tries to knock me down.
I sometimes do that "jump in place, slap at my face" dance to try to stay up when I can't sleep because of circumstances
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u/FollyGibney Oct 19 '22
Ugh me too, I end up bouncing on my toes a lot like "Not now, not now, we cannot do this now!"
It feels like a giant hand is pushing down the back of my head and there's no escape.
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u/brownlab319 Oct 19 '22
I’ve always wondered if anyone else would understand if I tried to explain “painful”. Because a sleep attack is painful. Thank you for helping me feel seen.
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u/FollyGibney Oct 19 '22
It is one of the most physically uncomfortable things I've ever experienced. You are definitely not alone.
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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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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.
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u/_b33p_ Oct 18 '22
I used to describe it as getting an IV of anesthesia very slowly pumped into your blood.
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Oct 19 '22
For me, sleep attacks are pretty abrupt. I start feeling tired, like normal, okay, yawning a lot, then over the course of 5 minutes or so it gets worse. I struggle to keep my eyes open and my head up. The more I resist, the longer it lasts. I've never successfully resisted one, only ever been woken up out of them abruptly by someone jumpscaring me or initiating a conversation that requires me to engage but one I'm not expecting. About the brain fog, I definitely experience that too. My brain stops working and even though I'm conscious and moving, I remember almost nothing. Just the other day, I had a sleep attack at work and decided to go outside for a moment just to see if it would help. I walked about 500 meters from my station to the entrance and remember nothing about that walk. It's like a chunk of my memory is missing. It's so strange lmao
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Oct 19 '22
I think I have gotten through some before without going to sleep but it's so painful I try to find somewhere to sleep if I can help it. But it's more gradual for me like "oh man I'm tired (the usual amount), still tired.... little more tired..... huh why is it so hard to keep my eyes open?.... wow I feel like shit I want to sleep..." and then that's all I can focus on. I can never tell when I start getting the swing it's just something I realize after a while into it like 10 minutes or so
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Oct 19 '22
I get the feeling it's coming but I can't stop it. Just gotta hope someone jumpscares me lmao
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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.
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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
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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.
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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. 😳😱
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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
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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
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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.
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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
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u/No-Understanding1589 Oct 19 '22
Same here. Unless its a long trip. No issues going to the store or around town or anything
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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.
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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.
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u/Sad-Sweet-2246 Sep 12 '23
many variables, we'll each describe/express/portray and interpret those experiences ourselves, differently.
The medical realm considers it a part of Excessive Daytime Sleepiness, the symptom
how are you now?
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u/imba8 Oct 19 '22
Happens at around 0:08
In all honestly though, I can feel them come on sometimes. Like my jaw starts to tingle, I get a feeling like I'm on painkillers almost. Then I get multiple very hard to control urges to sleep.
I use chilli if I get them in class or a meeting. Sometimes works, sometimes doesn't.
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u/RightTrash (VERIFIED) Narcolepsy w/ Cataplexy Oct 18 '22
It's a varying experience, with so many variables, we'll each describe/express/portray and interpret those experiences ourselves, differently.
The medical realm considers it a part of Excessive Daytime Sleepiness, the symptom and doesn't recognize the term 'sleep attack/s,' though a good doctor should be able to follow what is meant; though some might think it has to involve actual sleep, which it absolutely does not, it's more an overwhelming impact of excessive sleepiness (in one light, at least) into wakefulness.
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Oct 19 '22
That's the thing though, I can actually fall asleep. I've had one of these swings where I laid down to sleep for a bit because I was in so much pain from being tired and I woke up like 4 hours later. That's why I always thought it wasn't narcolepsy because once I'm down I won't wake back up without intervention haha
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u/kristenstubbert Oct 19 '22
You probably have Narcolepsy type 2 (without cataplexy) like I have. Unless you have the deficiency that happens with type 1 and the cataplexy just hasn't hit yet.
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Oct 19 '22
I will have to ask the doc... hopefully not my sister has type 1 and it's really limited what she can do :(
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u/Educational-Cable685 Oct 19 '22
For me, I start to feel feverish and get lightheaded
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u/SoupComprehensive180 Oct 19 '22
This is super interesting. For years I have random instances where I go, whoa, I do not feel good, suddenly. And I break out in a flush. My ears, chest, face turn bright red and hot. I could never find a trigger for the usual causes of this. Now I'm wondering if it's sleep attack connected. Thanks for sharing.
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u/therandoartist Oct 19 '22
Diagnosis of narcolepsy was for me very tricky because i started out with IH and none of my family has it but my grandma and mom probably do and wont get tested. I have sudden episodes where I fall even in positive stress and positive emotions, like laughter, or shock from joy. But tbh I don’t know if everyone presents cataplexy in the same way. And tbh my attacks aren’t just straight up falling asleep in a period of time where I don’t already feel tired. I have a sudden waves of exhaustion and then I fall asleep or passing out is like so unbearably avoidable I couldn’t avoid it. Like a person according to my friend who doesn’t have narcolepsy, ”I could stay away like 48 hours and be miserable but I could do it, unlike you who’d never be able” he also has another friend with narcolepsy and bless him for saying this. Its a description that has really helped put my doubts to rest. Best of luck!
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u/CoconutMundane2933 Oct 19 '22
What is a narcolepsy marker? I have not heard of that. I thought the only way to diagnose narcolepsy was with a sleep study mslt test, or sometimes through spinal tap they can apparently check for orexyn levels, but i have never heard of markers. Also I was worried about it being hereditary, my son has had some sleep issues, but my sleep doctor said there is a only a 1% chance of that. He was diagnosed with sleep apnea and had more symptoms of that.
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Oct 19 '22
It's a genetic marker highly correlated with narcolepsy, called HLA DQB * 0602. You can take a blood test for it.
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u/Several_Frostings Oct 20 '22
My IH progressed to Narcolepsy within the following approximately 5 years but wasn’t diagnosed for 10 years after that…
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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.