idiopathic hypersomnia
January 27, 2015 9:34 AM   Subscribe

Sleep is a curse. I've never had good sleep, and it just gets worse the older I get. I've tried everything (including CPAP) and it doesn't work. I suspect that what I have is some combination of sleep apnea and delayed sleep phase syndrome, though none of the suggested solutions for the latter are of any use to anyone who has to work a 9-to-5 job (i.e., many if not most people). I have concluded that I may just have to accept that life is pretty shitty for someone without normal sleep patterns.
posted by blucevalo at 9:53 AM on January 27, 2015 [2 favorites]

I'm in the same boat. I go through cycles where I sleep about 6 hours a night, then I might go two days on two hours. I also work a completely insane and unpredictable schedule that might allow me less than an hour over two days.

Last Thursday - Friday I got 15 minutes sleep on a loveseat in my regular studio. I was a zombie all the next 12 hour workday, stayed up until regular bedtime Friday night, and then slept 11 hours.

That's a once or twice every few years event for me, and the next two days I felt like a superhero, getting every single chore and task finished with almost no effort and ending the weekend with no to do list whatsoever.

Oh, to get normal sleep regularly.
posted by nevercalm at 10:24 AM on January 27, 2015 [2 favorites]

I get maybe 2-3 good nights of sleep per month. It's ghastly. I'm glad that my shitty awful upstairs neighbor has either stopped the bad drugs or started the good drugs that prevent him from undertaking elaborate woodworking projects at 3am on weekdays but the chronic pain thing isn't going to go away, alas.
posted by poffin boffin at 10:32 AM on January 27, 2015 [2 favorites]

Ah, Business insider. "I Drink A Lot Of Coffee And Am On Anti-Anxiety Meds;I Have A Sleep Thing ButI Went To The Sleep Clinic And They Didn't Find Much. But They Suggested Some Pills. I Might Take Them, I MIght Not." probably wouldn't aid clck-throughs.

Beware if you go to the sleep clinic in St Thomas's in London. It's very close to the Palace of Westminster and The Elizabeth Tower, home - BONG - of Big Ben and -BONG its friends - BONG - which go off - BONG - on the quarter hour - BONG - all night -BONG long. BONG.

"You didn't sleep well"

"No, no I didn't."

posted by Devonian at 11:07 AM on January 27, 2015 [11 favorites]

I've had crappy sleep for a long time, but a combination of forcing myself to wake at the same time every day (stimulants) and staying off the computer at night has helped a little. Also, no stimulants of any sort after noon.
posted by BrotherCaine at 11:31 AM on January 27, 2015

"idiopathic hypersomnia" sounds like the name of a radiohead track.

That BI article is pretty painful. There are few things that wind me up more than this sort of shitty medical pseudo-journalism- I mean, here's someone who has developed enough of a caffeine dependency that she can fall asleep after a cup of coffee, can't fathom doing a sleep study without it, and who instantly downed a diet coke the INSTANT she was allowed to have caffeine again. Who also - surprise! - has anxiety issues, and is always tired.

> She gave me a prescription for Nuvigil. I'll probably give it a try. The world might look completely different when I'm not sleepy.

Yeah, I'm sure more stimulants are the answer. What could possibly go wrong there. Something tells me that she wasn't exactly forthcoming with her crack team of medical professionals about her caffeine intake. I can't imagine anyone respectable saying "More stimulants for you" and NOT saying "Hey, perhaps you should cut back on the caffeine" - Everything going on from the anxiety to the dreams to the lack of REM sleep is TEXTBOOK stimulant dependency.
posted by MysticMCJ at 11:50 AM on January 27, 2015 [2 favorites]

"idiopathic hypersomnia" sounds like the name of a radiohead track.

I average one all-nighter a week and the next day I sing along with this.
posted by hal9k at 12:25 PM on January 27, 2015

"idiopathic hypersomnia" sounds like the name of a radiohead track.

Naw, it sounds like an R.E.M. song.
posted by sylvanshine at 1:18 PM on January 27, 2015 [2 favorites]

It is true that people treat sleep disorders like they're complete bullshit. No one cares about the fact that you can barely function day after day after day because you cannot get restful sleep. I've had severe insomnia my whole life, and to compound that Delayed sleep phase disorder and it's exhausting beyond words.

It's like the same shit you get with depression, "why don't you just get to bed earlier" or "oh yeah I totally have insomnia, I slept poorly last night, lol" It's fucking miserable to deal with every single day feeling like I'm running on empty, slamming as much caffeine as I can into my body in the morning, then taking sleeping pills at night just to get into semblance of a normal sleep schedule. No one accepts that being tired all the time is more than just a minor inconvenience because they have no god damn concept of what it's like to live with that every day.
posted by Ferreous at 1:27 PM on January 27, 2015 [20 favorites]

Yeah, people are good at that. It's like saying "You're diabetic? What you should do is just process insulin normally, like I do."
posted by thelonius at 1:32 PM on January 27, 2015 [8 favorites]

Nuvigil isn't a stimulant in the traditional sense. It's what they call "Orexinergic". That is to say - it doesn't do anything to make you more awake/speed you up. Instead of working on the dopamine pathways as amphetamines do, it works with the Orexin pathways.
posted by symbioid at 1:49 PM on January 27, 2015 [2 favorites]

Provigil was the only drug I ever took that provided adequate all day relief from tiredness and kind of kept my sleep schedule on track. Too bad it's cartoon expensive.
posted by Ferreous at 1:51 PM on January 27, 2015 [5 favorites]

It is true that people treat sleep disorders like they're complete bullshit... It's like the same shit you get with depression, "why don't you just get to bed earlier" or "oh yeah I totally have insomnia, I slept poorly last night, lol"

I would favorite this comment a thousand times if I could. The comparison to depression is so apt.

I'm also a lifelong insomniac who seems to suffer from something along the lines of delayed sleep phase syndrome. It's incredibly invalidating to hear, "Oh yeah, just drink some coffee," or "I like sleeping in too," or whatever, when I still vividly remember when I had to wake up at 6 am to get to school as a teenager, and I spent every single morning fantasizing about some catastrophe (earthquake, school burns down, I break my leg, major car accident, whatever) that would let me go back to sleep. And obviously I didn't really want to have a tornado hit my town, but that is how desperately I did not want to be awake. And, despite what people used to say, I have not "grown out of it."

I've tried all the sleep hygiene/hacks that I've read in books, on the internet, here on mefi: consistent sleep/wake times, blackout curtains, no electronics, no caffeine, lots of caffeine, etc, etc, etc. It's not that I can't wake up early in the morning because I absolutely can when I need to for work or other obligations. It's just that I feel like death whenever I'm awake any time before noon. And I also have to set 5 alarms on my phone, plus two other alarm clocks across my room, and I still snooze many, many times. Lots of people say "You're not supposed to hit snooze," but it's not something I can choose to do or not do. I often don't even wake up enough to remember the first several alarms that I've turned off.

On top of that, even if I consistently force myself to be in bed by 11 pm and force myself to wake up at 7 am, it doesn't get any easier. Basically, my body wants to be asleep from approximately 5 am to noon, but that's just not possible most of the time, so I just make do the best I can, but it really sucks and having to function in the morning is physically painful. The other unfortunate thing is that even if I'm running on four hours of sleep and I've been up since 6 am, I still get a second wind at about 10 pm and find it really hard to fall asleep. On the other hand, I can easily stay awake until 4 am without any caffeine. In fact, it's easier for me to wake up at 4 am than it is for me to wake up at 7 am, regardless of when I've gone to sleep.

Anyway, that's the end of my rant.
posted by litera scripta manet at 1:53 PM on January 27, 2015 [15 favorites]

I got so caught up in my rant when I actually meant to address the nuvigil/provigil thing:

I actually tried provigil after it was prescribed by my doctor to help with my sleep phase issues, but it literally did nothing for me other than making me slightly nauseous. After a few days of nothing, I just gave up. It was pretty disappointing, because it seemed so promising.

I do know these drugs are supposed to be less addictive, but I am still surprised by how seemingly casual some doctors can be in prescribing them. Like, in the BI article, although maybe it only sounded like that because of the sort of flippant way that it was tacked on at the end. This also made me think of this Slate article from awhile back.
posted by litera scripta manet at 2:11 PM on January 27, 2015 [1 favorite]

Also like depression, if you tell someone you're an insomniac you're going to get a steaming load of unsolicited medical advice!
posted by Ferreous at 2:17 PM on January 27, 2015 [4 favorites]

I can easily sleep 12 or more dead-to-the-world hours every night, and if I let myself go without an alarm, I will generally sleep until noon or 1 p.m.

When I have to wake up to get to a 9 a.m. job, I feel like I've missed out on five or six hours of sleep, because I have. I start the workday in a complete haze and it takes me a few hours to snap out of it. Over time, waking up, organizing myself, and getting my ass into the office gets harder and harder, and I get later and later.

In terms of alarms, I'm currently using the alarm on my phone, and a Moon Beam alarm clock, and a giant BlueMax lamp that's plugged into a timer, which is to say, I've spent hundreds of dollars on fancy wake-me-up devices that only half work.

My brother is the same way. As is my first cousin. My mom, on the other hand, wakes up by 5 a.m. without an alarm each and every day, and cannot force herself to sleep later. She periodically suggests that I try drinking a warm cup of milk before bed. I know she's trying to help, but gah.
posted by evidenceofabsence at 2:56 PM on January 27, 2015 [4 favorites]

Please don't take what I'm saying as being dismissive of sleep disorders entirely. They are absolutely a real thing, and that's actually one of the reasons I'm annoyed - The BI article feels like it's really trivializing it.

And I'm not certainly not trying to diagnose, but I honestly don't see how the less caffeine thing would not come up with a practitioner - ESPECIALLY if stimulants are to be prescribed. That's like the first thing you do if you ARE going to go on stimulants is cut the caffeine. And if everything checks out in the sleep studies (which they did, according to the author) then I'd really think that would at least warrant a try. I would have been able to take it much more seriously if it wasn't a jump straight to more stimulants.

> I could definitely take a nap at any time and want to crash right after work. But I'm also productive. I exercise every morning and go to work every day, and I often socialize with friends at night. They make fun of me for yawning by 9 or 9:30 p.m., but they're never surprised when it happens.

That seems TOTALLY NORMAL to me.

> Like most New Yorkers with a social life and a job, I don't have the time to sleep a dozen hours to see whether it does the trick and makes me less sleepy.

This is where it really hit me. I mean, I get it, most people really don't have time to sleep 11-12 hours. But the ENTIRE TONE of the article makes it sounds like she is someone who is incredibly busy who is pushing herself too hard and who is a caffeine junky. The only "quality of life" impact I see in the in the entire article is this:

> Recently, we were sitting around with her friends playing the board game Taboo in the early evening when I crashed hard on a comfy chair and started to snooze during the rowdy game.

What I think of are things like being so tired it affects your work life and your relationships. Being so tired that you are afraid to drive half of the time. Being so tired that you are chronically late to work. Being so tired that it impacts your life in a way other than just, well, feeling tired.

The article is full of a lot of carefully chosen and selected statements that seem to support a predetermined outcome... I can't help but wonder what the omissions were, and I feel like the entire thing is so shallow it does a disservice to those who are actually diagnosed with sleep disorders (as opposed to "supporting a diagnosis" - never once does she actually state that there was a definitive diagnosis, yet it's the only one she latches on to) just as so many similar articles do a disservice to those who are diagnosed with mental disorders.

Maybe it's just a tone thing. It just seems so reminiscent of a lot of the "Hey! I should try stimulants!" articles that come up from time to time that it may be setting me off for no good reason.
posted by MysticMCJ at 3:37 PM on January 27, 2015 [1 favorite]

Oh hey this must be what I have. I sleep 12-16 hours a day almost every day. I've also had sleep marathons that lasted over 40 hours with only brief (<2 minute) bathroom/water breaks.
posted by Jacqueline at 3:46 PM on January 27, 2015

Sorry, I just really like it when people sleep, dunno why.
posted by idiopath at 4:09 PM on January 27, 2015 [9 favorites]

Hypersomnia, huh? Isn't it totally normal to be able to sleep 12-20 hours at a stretch? Not just once, but every night?

More seriously, I'm pretty sure I have some lesser variant of this. I've never slept for biblical amounts of time--no 40 hours at a stretch--but I'm completely capable of 14 hours for nights at a stretch. It's still a pretty terrible toll on one's life (that's a lot of time to spend sleeping) and generally speaking there's an annoying assumption that you are depressed (automatic reaction at the doctor's office).

Still, the worst part isn't sleeping forever and ever. It's waking up still sleepy. It is incredibly, vanishingly rare for me to wake up and feel energized. Normally I wake up and feel sleepy, go to work and feel sleepy, so on and so forth. I once had a practicum supervisor whose main complaint on my eval was that I couldn't stop yawning (a complaint no one before or since has made but notable nonetheless). I'd almost rather be an insomniac, because at least society knows what that is!
posted by librarylis at 5:04 PM on January 27, 2015 [1 favorite]

Nuvigil isn't a stimulant in the traditional sense. It's what they call "Orexinergic". That is to say - it doesn't do anything to make you more awake/speed you up. Instead of working on the dopamine pathways as amphetamines do, it works with the Orexin pathways.

Amphetamine's effect in promoting wakefulness is predominantly on the adrenergic/noradrenergic pathways. Modafinil, despite probably having some effect on orexin receptors, most likely works predominantly through adrenergic mechanisms as well, with the orexin effect thought to be less relevant (indeed, whether it is important at all is controversial). The takeaway is that it's not ultimately too different from the amphetamine-type drugs, though that's not necessarily a bad thing, as these can be very effective in sleep disorder treatments in appropriate doses.
posted by monocyte at 8:48 PM on January 27, 2015

It's almost a shame the BI article was included, because the piece on Medium is what is interesting here.

I've not felt rested since I was a kid. I can sleep 12 hours a night and can nap basically any time if I allow myself. And yet I never feel rested. I've managed to have success in life, but I've also had to structure my life in a way in which I could function.

- I own a business that doesn't need me to be awake before noon.
- I have an incredibly understanding wife who stays at home and takes care of our kids.

The Medium article, and the FB group/website for hypersomnia are the first time I've ever read about people who sound like they are going through what I have gone through. It's incredible.
posted by imabanana at 10:06 PM on January 27, 2015 [1 favorite]

delayed sleep phase syndrome - holy crap, I didn't know there was a name for it! I've had it since I was a kid. I used to say "I was born at 2am, and I've been awake for almost all of them ever since." If I have to wake up earlier, I just... don't get the sleep. And I have to set multiple alarms etc, have been fired from jobs for oversleeping, etc.

I always wondered though, 'cos one of the first things they recommend is that you quit caffeine and alcohol and that sounded super unreasonable, because I sensed that I would just be sleepier and more stressed and even less equipped to cope with reality.

But I just recently had to quit both of them for the last 6 months (duodenal ulcer, oy) and I go to sleep just as late, and wake up more hungover than ever. It takes me hours to wake up every day.

And the beauty part is, if I take a 20 minute nap? It takes me hours to wake up from that, too. Sorta defeats the purpose.

Anyways, nothing very productive to add, I just wanted to testify, that this is something I've been suffering with for years, and it's pretty cool to know it's not just me.
posted by hap_hazard at 12:10 AM on January 28, 2015

The worst part isn't sleeping forever and ever. It's waking up still sleepy.

Yes. I have a 10-6 job (used to be a 9-5, then a sympathetic boss tweaked my schedule as much as he could). Every day, I get out of bed feeling like some poor little creature that's been flushed from its burrow.
posted by virago at 6:31 PM on January 28, 2015 [2 favorites]

"Hey, perhaps you should cut back on the caffeine"
She didn't mention this - but the first line of investigation into sleep disorders is usually complete elimination of caffeine for a while. I doubt any insurance company would authorize a sleep study is this had not happened. I personally have cut out caffeine for up to a year at a time without any improvement in symptoms.
posted by bq at 9:00 PM on January 28, 2015 [2 favorites]

Ferreous, the patent on provigil (modafinil) ran out a couple of years back, and it took longer than it should due to shenanigans by Cephalon, but a generic is available so it's finally a bit less expensive ($270/month). Nuvigil/armodafinil is the patented single-enantiomer replacement and is INSANELY expensive (over $1,000/month).

They don't seem to behave like a traditional stimulant in most people (but do in some). Neither one has a stimulant effect on me, they just make me feel less like I need a nap at all times. I am aware of the CNS stimulant effects of caffeine, pseudoephedrine, methylphenidate (ritalin), or amphetamines, and it just isn't like any of those. No rebound if I stop taking it, no jitters, no racing heart, feeling wound up, or elevated blood pressure, just an extremely welcome break from feeling like I need to sleep at all times.
posted by Hello Dad, I'm in Jail at 2:34 AM on January 30, 2015 [1 favorite]

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