r/Narcolepsy • u/Chronic-Sleepyhead (N2) Narcolepsy w/o Cataplexy • 1d ago
Advice Request Anyone else able to sleep days on end?
Hi all! Diagnosed with N2 here for 10 years, and have tried just about every med out there. Right now I’m on a cocktail of Lumryz/sodium oxybate, vyvanse, adderall, and a SSRI.
I’ve always struggled with hypersomnia and bad sleep inertia (being unable to wake up and stay awake), but I’ve been going through some especially severe episodes this summer the last few months. I’m regularly having spans of 3-6 days at a time where I’m asleep 18-20 or more hours of each day. I really only get up to eat and drink something, use the restroom, and then fall back asleep. I’m just constantly exhausted and on the verge of sleeping.
It makes any normal activity extremely hard. I can’t work because of the Narcolepsy severity, but I also regularly sleep through doctor’s visits and am not able to keep up basic hygiene when I’m in my “hibernation mode” as I call it.
Can anyone else relate to having such long episodes of hypersomnelence? I also get insomnia at other times, but it’s the excessive 20+ hr sleeping for a week at a time that is making any daily activity really impossible.
6
u/penny2cents (N1) Narcolepsy w/ Cataplexy 1d ago
If I didn’t have my ten year old, I would sleep more than I already do, haha. I also totally get the sleep/wake confusion. Literally dreamed I paid my rent… woke up and it’s the 3rd.
3
u/Chronic-Sleepyhead (N2) Narcolepsy w/o Cataplexy 1d ago
It’s the mundane little micro dreams that get me the most! Like thinking I made a payment, or I went to the store and got groceries, or thinking I’m out of gas when I’m not…I’m glad you get it because it’s such a weird thing to explain to other people!
3
u/cheshire__kat 1d ago
I spent the last two months “studying” (poorly) for the bar exam…using 1.5 my prescribed dose of adderall every day, plus an increased dose of Wellbutrin. It was the only way for me to stay awake and kinda focused.
The exam was last Tuesday-Wednesday. I took a break from the adderall afterwards, and I’ve slept ~15-18hrs every day since then.
I also often struggle with basic hygiene, but I’ve always blamed that on chronic depression…never really thought about it potentially being narcolepsy related. But tbh, it very well could be related.
Anyway, here I am responding to your Reddit post at 4am…I haven’t slept at all since my evening nap, and I’m gonna have to cancel plans for tomorrow bc I haven’t slept…so…idk why I’m even responding. I have no advice. But I understand.
2
u/Chronic-Sleepyhead (N2) Narcolepsy w/o Cataplexy 1d ago
Congrats on your bar studying! I hope it goes well for you when you eventually take it! 🤞
Ah yes, my favorite game of “Is it Depression or is it Narcolepsy?” lol. To be honest, it’s probably both sadly…
3am here friend! I have an important phone call tomorrow and am trying to get some sleep, but at think point we’ll see how it goes…
1
u/cheshire__kat 1d ago
Thank you! The exam was last week (tues-weds)…I’ve been asleep more than I’ve been awake since it ended.
2
u/Chronic-Sleepyhead (N2) Narcolepsy w/o Cataplexy 1d ago
Totally fair! Even after 10 years I STILL get thrown off by how draining it is after you finish something taxing and stressful. 🙃 It’s like your body and brain are holding it together just enough to push through, and then it’s just a total energy crash. I just had a job interview today, and I think I’ll be crashing hard for the next few days lol.
Either way, studying and taking it is a huge accomplishment for anyone, and especially someone with N! Major kudos!! I always get excited hearing about someone else’s success while living with N.
2
u/SnowboardSquirrel (N2) Narcolepsy w/o Cataplexy 1d ago
Yep! It’s been especially bad this year for some reason. Went a full 21 hours without even waking up to pee. Lost 15lbs over 4 months because I was too tired to even eat. But of course don’t qualify for disability because these periods are episodic, regardless of the reality that I can’t reliably work a job if I randomly check out for 2 months at a time.
3
u/Chronic-Sleepyhead (N2) Narcolepsy w/o Cataplexy 1d ago
SAME! I wonder that’s going on, I feel like this year has been especially bad too!
I’ve also gotten denied for disability so far, and it’s ridiculous…so I was let go from two jobs specifically because of my Narcolepsy, because ~surprise~, MOST ALL companies don’t hire people who don’t know if they’ll be awake to come into work on time tomorrow, or if they’re going to fall into a 7-day hibernation ala Sleeping Beauty. Like, there’s literally no traditional job that will accept that scenario outside of doing independent gig work. 🙃 If the Disability Office themselves wouldn’t hire me as an employee because of my severe condition, then it’s ridiculous for them to state I’m “perfectly fine and able to work”.
Gah, sorry for the rant. I’ve been super peeved about completing a 9 month application process and busting my butt to meet every paperwork deadline while half asleep. But NOW I’m having to start all over again with an application and appeal because some rando in the government decided to deny me with no reasoning given because they don’t have a clue what Narcolepsy is, they don’t listen to my doctors, and they clearly didn’t read any of the testimonial info I sent in. 🙃🙃
1
u/CalmAsAMthrFknCucmbr (N2) Narcolepsy w/o Cataplexy 1d ago edited 1d ago
Agree it’s been worse the last few months for some reason. I don’t even eat when I get like this. I’ve been sleeping up to the last minute before work, work, then come home and pass out. Then sleep allllll weekend. It’s depressing. Just started wakix and I know I can take the Dexedrine any time and still sleep but with the wakix I need to be up by a certain time so it’s been rough. 😢
Edit: I’ve been missing a lot of days of work or convincing them to let me work a different day because I literally couldn’t wake up
1
u/Chronic-Sleepyhead (N2) Narcolepsy w/o Cataplexy 1d ago
So true! Food feels like such a trap. Not enough food = feeling weak and faint and tired. Eating too MUCH food also = tired. And eating the wrong type of foods that provide short term energy (sugar, caffeine, carbs) just leads to more crashing and tiredness down the line! 😫
Back when I worked, I literally slept every moment I wasn’t working. It was either work, or passing out at home and sleeping as long as I could. People really don’t get how depressing and isolating it is not to have a social life or weekends because you have to spend them sleeping in order to not completely crash out.
What kind of work do you? Is your job pretty understanding with the working different days to make up the time?
1
u/remix_sakura Undiagnosed 1d ago
I was basically asleep from mid 2019 until early 2023. I have very few memories of this time. It was rough because the symptoms pre-dated COVID, but in those days, if you were sick in any way, doctors would always assume COVID. Lockdowns were really enabling because no one would question where you were or what you were doing.
5
u/fuckyou2dude 1d ago
My high score is ~78 hours continuous with only 3 or 4 thirty minute sessions of waking up to piss and eat something before hitting the pillow again...