June 24, 2011 8:08 AM   Subscribe

Mrmblmbembmmm. Sufferers of Excessive Daytime Sleepiness, how the heck do you do it?

I've been struggling with my sleep health lately, but I'm working on it. Long story short, I'm constantly exhausted, fall asleep at work, and have been forgoing basic life functions in exchange for glorious sleep. I thought it was because of antidepressants, got various tests with no result and went to a sleep doctor who thinks I may have narcolepsy. The descriptions I've read of EDS and the EDS part of narcolepsy symptoms very much reflect how I feel every friggin' day. I have a sleep lab test in a month (BUT I WANT IT NOOOWW). A month or two ago my psychiatrist prescribed me ritalin when I complained of exhaustion and desk-sleeping, so that's been getting me through my workdays. At sleep-doctor's suggestion (when I complained of "I just go home after work and pass out!") I've been taking a half dose two times a day, rather than taking the full dose in the morning and being 110% alive at work. I'm trying to supplement with coffee but I'm new at this (and the office coffee sucks).

Anyway, I could really use some advice on how to get through this until my appointments. It's going to be another month until the lab, and a month after that until I have results and some sort of treatment. I'm trying to use my ritalin sparingly due to its controlled nature. Even with that, getting up in the morning, showering, eating, and basically doing anything other than sleeping, watching netflix, or mindlessly reading the internet is a challenge.

I can't get myself to read books on the train anymore without falling asleep, so I'm turning to mindless iphone games. I've been playing a lot of Coin Dozer, a coin pusher iphone app that's the most brainless (yet pleasing) game I've ever played. I would love recommendations for games that require similar limited skill and mental capacity.

Before that, though, my biggest challenge is getting out of bed and doing morning stuff before the wake-up pills kick in. I was hoping I could get some advice on that. How to not hit the snooze button when I wake up feeling exhausted, but more sleep isn't refreshing. How to not be late for work because I'm so slow moving and brain-foggy. General tips for enduring daily life with this feeling would be great. If I didn't live with my boyfriend, I'd probably get one of those super loud alarm clocks that runs away from you. I thought about treating myself to some kind of fancy coffee machine, but I can't imagine adding anything else to my morning routine. Sorry this is such a foggy post, today is particularly bad. Any help would be very much appreciated.
posted by ghostbikes to Grab Bag (21 answers total) 17 users marked this as a favorite
This thread might help you a lot. Good answers in here.
posted by juniperesque at 8:19 AM on June 24, 2011

Response by poster: Heh, funny you should link that post, juniperesque... I'm quite familiar with that sockpuppet I mean person
posted by ghostbikes at 8:26 AM on June 24, 2011 [3 favorites]

Have you tried the extended release version(s) of Ritalin? When I was on the regular dose, I had to take it 3x a day to function, at increasingly higher doses. Now I take 30mg Ritalin LA (long acting? lol awesome? less aggravating? idk) and it is a fucking lifesaver. (for adhd, not narcolepsy, tho.)
posted by elizardbits at 8:37 AM on June 24, 2011

I'm trying to use my ritalin sparingly due to its controlled nature.

I don't understand this. Why? Use it as much as your doctor and pharmacist say that you should.
posted by desjardins at 8:58 AM on June 24, 2011

Response by poster: desjardins - my psychiatrist is leaving, and I won't be able to get another prescription until I get a new psychiatrist in a month. The last time my dose was increased I had to wait a certain amount of time to get more because they would only give me so much in a 30 day period. for now I don't have anyone to ask for a new prescription, and I probably wouldn't be able to get it filled now anyway, so I'm splitting up one capsule into two doses rather than take two doses a day. I'm also kind of worried about getting too addicted/dependent on it.
posted by ghostbikes at 9:09 AM on June 24, 2011

Response by poster: "they would only give me so much", "they" => the pharmacy.
posted by ghostbikes at 9:10 AM on June 24, 2011

I'm glad you're getting a sleep test soon - I'm assuming you've taken some of the previous advice.

Don't worry about getting addicted or dependent on your ritalin. Your worry right now needs to be staying awake and improving your health, you can deal with the unlikely event that you get dependent on ritalin at a later date if necessary.

See if you can contact your psychiatrist before he or she leaves, even via phone, and ask to up the dosage. You should be able to get more this way (as a controlled substance) by simply increasing the dosage but keeping the same number of pills. If not, I'd strongly recommend going to a drop-in health center, they're used to people going to them when they're between prescribers. Take a copy of your records and your most recent scrip, someone should be willing to tide you over.

What does your boyfriend, who you live with, have to say about all this? He might be more willing to help you out than you think. When you are having a major health crisis, people you love will rally around you, even if that means using a runaway alarm clock.
posted by juniperesque at 9:34 AM on June 24, 2011 [1 favorite]

I've got the glorious combination of chronic insomnia and narcolepsy, and the best thing I've found so far is Provigil. (I think the pharmaceutical just came out with Nuvigil, which is effectively a more concentrated version. Basically, they purified it down to just the enantiomer that has an effect.) In the past I would rely heavily on no-doz, but it is easy to get adjusted to caffiene, so now my morning routine involves multiple alarms, a shower, no-doz, Provigil, and a multivitamin.

I don't know if this helps, but I also take meds to sleep as sort of a way of enforcing a regular sleep cycle.
posted by gwyhir at 9:37 AM on June 24, 2011

Also, agreeing with what the young rope-rider said. I used to have two alarms, and would wake up for the first and take a caffeine pill, and then by the time the second went off I would be a bit more awake.
posted by gwyhir at 9:42 AM on June 24, 2011

Sleep apnea is a major cause of Excessive Daytime Somnolence. Apnea patients who are without their CPAP machines are sometimes advised to sleep sitting up, because it helps keep the problematic tissues from closing off your air passages during the night. If you have a comfy enough chair, you might try giving that a shot.
posted by palmcorder_yajna at 9:54 AM on June 24, 2011

+1 on Provigil / Modafinil. It turned a narcoleptic friend's life around. It's obsession-inducing in him, which he has to manage by other means - including being careful of dosage and not taking too much caffeine.

I have had problems with mild excessive daytime sleepiness as well. Not any more though. Don't know. I do think that Bupropion / Wellbutrin helped too. It's definitely a stimulant at any rate!

Then I must absolutely not smoke cigarettes, I have to stay hydrated, and I MUST NOT drink too much coffee too late in the day. The half-life of caffeine is surprisingly long; Just a little too much coffee after lunch and the quality of my sleep that night will be noticeably less. Perhaps not noticeably during the night or in the morning, but later in the day after.

Then food is a significant factor! Too much sugar and 'hearty' meals make me sleepy. More frequent small meals are much better. I strongly suggest you experiment with food. Try cutting out carby stuff, milk, and grains, and going mildly "paleo", turning to proteins, nuts, and vegetables.
posted by krilli at 9:55 AM on June 24, 2011

It sucks. Hang in there. It gets better.

posted by krilli at 9:57 AM on June 24, 2011

I actually tried bupropion, it did help with the 'falling asleep at random' part of things, but I completely lost my appetite. Just out of curiosity, krilli, did you have huge problems with side effects?

And on the food side of things, milk/dairy allergy can sometimes result in daytime sleepiness, according to a nutritionist I saw a while ago. Cutting it out did help a bit, but this was a while ago. And yeah, agreeing with the whole 'eat many small meals thing.'

Heh, speaking from experience, it can be absurdly painful to try and stay awake, but it does eventually get better, and there are loads of things that can help with this. Really working with a psychiatrist to figure out what helps is a fantastic way to deal with it. Find someone who is willing to just try stuff out (within reason), and make sure you are honest about what helps and what doesn't. Feel free to just tell them that whatever the latest attempted solution to the problem is just isn't helping. I know that is what got me, particularly in the beginning.
posted by gwyhir at 10:09 AM on June 24, 2011

From everything I've heard, another +1 for provigil/nuvigil. Folks who have taken it say it's kind of a wonderdrug. Apparently, its mechanism of action isn't all that well understood, but it's chemically quite different from more typical stimulants like ritalin or caffeine. As such, it's often called a "wakefulness promoting agent" as opposed to a classical stimulant. There's a decent body of research that supports its off-label use for treatment of depression as well, although it is not approved by the FDA for this indication.

As for getting up in the morning, maybe try leaving a pill and some water on your nightstand before you go to sleep. When your alarm clock first goes off (or at least after you've hit snooze a few times and have become vaguely conscious), take the pill, even if you go to sleep again right after. Maybe your boyfriend can help get you to do this. Then at least you've got the medication taking effect while you fight to wake up. Good luck!
posted by zachlipton at 10:23 AM on June 24, 2011

One thing I've added to my wakefulness repertoire is a big glass of ice water in the morning and whenever I feel super droopy. I drink coffee, too, but this is my attempt to stay away from additional caffeine. I find that it helps a lot plus it's healthy and good for me. Has to be icey-cold, though.
posted by amanda at 10:36 AM on June 24, 2011

gwyhir: Not a lot, no. With one exception. I did notice some things, but more in the vein of "somewhat noticeable differences" rather than side effects per se. Most of these differences were positive. Increased sensitivity to caffeine could perhaps be called a side-effect.

Bupropion really helped with my general low-level brain weirdness - depressive-ish ADD-like sleepy sub-optimal function with amotivational and anhedonic tendencies. Everything just kind of clicked into place. Slept just enough, less cravings, tangential obessions turned to willful pursuits, brighter mood, better organization. Not happier per se, but more able to dig myself out of the hole.

The one exception side-effect wise was that my psoriasis got noticeably worse. Bummer!
posted by krilli at 10:46 AM on June 24, 2011

krilli: Interesting. I got less of a general wakefulness from it, and more of a caffeine-like buzz, followed by headaches and an inability to eat. Ah well, with the psychoactive drugs, a lot of it is still a mystery. Thanks, though. (And sympathy for the psoriasis issue).
posted by gwyhir at 11:06 AM on June 24, 2011

My husband gets his ritalin (for ADHD) from our family doctor, not a psychiatrist.
posted by desjardins at 11:10 AM on June 24, 2011

Have you had your Thyroid checked?
posted by dgeiser13 at 11:26 AM on June 24, 2011

I thought it was because of antidepressants

Are you sure it's not? A friend of mine had very similar symptoms to the ones you're describing and it was due to being on antidepressants + some OTC medications which worked together to make her extra-super sleepy all the time as each had a side-effect of drowsiness.
posted by burntflowers at 11:54 AM on June 24, 2011

Choline supplements helped me.
posted by TwelveTwo at 10:44 AM on June 25, 2011

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