Monday, March 4, 2013

Delayed Sleep Phase Syndrome

I can't remember if I've talked specifically about this or not.  I feel like I have, but at least this way there is an official post.  I wish I had trumpets for a fanfare.

I officially have a sleeping disorder.  I've known about it for a few years now, and it's called Delayed Sleep Phase Syndrome.  While I've had it since high school, it wasn't until a few years ago that I really noticed a problem, so it took a while to get diagnosed.

Q: SO WHAT IS DELAYED SLEEP PHASE SYNDROME?
A: It's when your circadian clock is kind of permanently messed up.  I explain it as permanent jet lag, but your body just cannot readjust.

Q: WHY DID IT TAKE YOU SO LONG TO FIGURE IT OUT?
A: Well, in high school, I slept 2-4 hours every night.  But I was a full time student, I took an extra class after school, I had cello and piano lessons, I was in 3 regular orchestras plus 3 seasonal orchestra, all my classes were Honors or AP, and I was a really GOOD student.  All my friends, also Honors and AP people, had similar sleep schedules.  It was the price we had to pay to get everything done.
In college, everybody has weird schedules.  Nobody is going to sleep at 9:00.  I just scheduled my classes to be in the afternoon, but even so, I needed an alarm clock to make it to my 1:00 p.m. class.
When I started working, I went back to my 4 hour schedule because that's what I needed to do to be prepared every day to teach.
A few years ago, it started becoming a real problem.  After starving myself of sleep all week, I'd sleep a good 10-12 hours on Friday night, and then on Saturday night I'd end up going to sleep at 4 in the morning, and then I wouldn't sleep at all on Sunday.  So that first Monday back to school I'd usually be awake 30 something hours.  You'd think that my body would go, "Man, I'm tired!  Let's go to bed super early tonight!" but no.  It would go to bed at maybe 3:00 a.m.  The next night maybe 2:00.  No matter how tired I was, I'd lie in bed and almost fall asleep...but not quite.
That's when I went to my doctor, who then referred me to a neurologist.

Q: HOW COULD YOU WORK WITH ONLY 4 HOURS OF SLEEP EVERY NIGHT?
A: I'm not sure.  My body...while it breaks really easily, it's really tough at the same time.  I also used to not feed it enough, and nothing bad ever happened except, strangely, gaining a lot of weight.  I've been sleep deprived since I was 11.  While waking up every day was physically painful, I'm really good at forcing myself to do what I need to do.  My will always wins, and my body seems to be really good at digging deep and just...doing it.  I read about other people who have lost jobs and friends over this, and I'm grateful that somehow my body can suck it up and deal.  It's not happy about it, but it can do it.

Q: HOW IS IT DIAGNOSED?
A: There's a checklist of symptoms.  My neurologist said that she usually can never say this, but she was 99.9% positive I had Delayed Sleep Phase Syndrome because I was basically textbook.  I had every single symptom.

Q: HOW DO YOU TREAT IT?
A: Ironically, Delayed Sleep Phase Syndrome is resistant to sleep drugs.  I once called my doctor asking for the highest dose of Ambien (I tend to need high doses of all medicine) because work was about to start again and I was going to sleep at 3 in the afternoon.  She gave me a week's worth, but as soon as I was done with the week my body tried to go back to going to sleep at weird times.
My doctor suggested "good sleep hygiene" and waking up at the same time every day.  For a month, I tried it.  That meant waking up at 5:30 in the morning on Saturday morning, which just...hurts.  But while I was never exhausted, I was also never really rested.  I never got that Saturday morning feeling of, "Ah, I just slept as much as I needed and wanted and I feel AMAZING now!"  I assume it feels a lot like going on antidepressants, where you're not super sad but you're never happy, either.  Like that. But with sleep.
I started taking massive amounts of melatonin.  I started with 5mg.  Then 10.  Then 15.  Then 20.  Then 30.  With melatonin, I could usually get 6-7 hours of sleep Monday night - Thursday.  Friday and Saturday I'd sleep as much as I wanted, Sunday I'd force myself awake at a decent hour (8 - 10am) and Sunday night I'd probably get 2-4 hours of sleep.  It was manageable.
Fortunately, for everybody, being sleepy doesn't make me grumpy.  Being sleepy doesn't really slow me down, either.  It has affected my short term memory, but only about unimportant things.  I forget where my sunglasses are every day, but I never forgot a meeting or a due date.

I have the theory that I really am hyperactive, because I was a SUPER energetic kid.  I remember feeling like there was so much energy in me that it was bursting out of me.  Being sleepy all the time just made me a normal person, in terms of energy levels, so it's okay.

Q: WHAT DOES YOUR SLEEPING DISORDER DO WHEN YOU AREN'T WORKING?
A: That's been the really interesting part.  Since I'm not working now, I'm allowing my body to sleep when it gets sleepy and to sleep as much as it wants.  Sometimes I start to feel guilty and try to force myself awake at decent hour, but I've noticed that even when I do that, I slowly start moving forward.  I will go to sleep and wake up a little later every day, but be sleepy.
The last 3 weeks, I've said, "Forget it!  When am I ever going to get the chance to sleep as much as I want ever again?"  My days are now approximately 26-28 hours long, with occasional jumps in that where my body will just decide to be awake for 23 hours and then sleep for 10 hours.  Sometimes it decides to sleep for 6 hours two nights in a row and then 10-12 hours the next night.  But it is definitely refusing to conform to a 24 hour day.  It likes to be awake 16 - 18 hours, and it likes to sleep 8-10 hours, typically.

Q: WHAT WILL YOU DO WHEN YOU START WORKING AGAIN?
A: I assume there will be a period of adjustment when I have to train my body to have some normalcy again, but that's okay.  My body's response to things like that is typically, "Awww!....eh, okay."  I also assume it will be a lot like when I was teaching.  And that's okay, too.  I'm used to it.  I'm used to always being sleep, and everybody around me is pretty used to it, too.  I think it has been so well received thus far because...it really doesn't affect my mood or cognitive ability, nor does it affect my ability to get things done.  I have always been a person who gets things done faster than most others and better (sorry that sounds so EUGH but...it's true).  And I think THAT has been so well received because I'm not a jerk about it, I don't typically brag about it, and I know I'm the weird one, not you.

Speaking of which, it's almost my bedtime.  I think.  I can't really tell these days.  I am going to try a new supplement this week: Valerian Root.  I heard on Dr. Oz that it can help.  It may, it may not, but it doesn't hurt to try!

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