So, the title of my blog got a lot less ironic today. I’ve been dealing with mounting exhaustion for a while now. Each day it has been harder to extract myself from bed. I started falling asleep during favorite TV shows and movies. Not when I stayed up too late, or figured I would watch TV as I drifted off, but during things I wanted to see. I began to sleep away entire weekends. I would fall dead asleep, even if I had plans or somewhere I needed to be.I stopped running, or really doing any activity because I was just. Too. Tired.
So, I brought it up at my last annual exam, and made an appointment around the same time to see my neurologist as a precaution. My regular doctor ran every blood test known to man, including some that were highly, highly improbably. The gamut ran from checking white blood cells and my thyroid to every STD in the book. (If any of the STDs came back positive, I would have been floored. It’s just me and the hubs, and he’s clean. Where would it have come from??) All came back perfect, and I gave myself a pat on the back for taking my vitamins every day. So, on to the neurologist. He gave me a once over, and said that I might have some sleep disorder. He explained some of the possibilities, such as sleep apnea. “I can’t have sleep apnea,” I thought, “I’m not obese!” It turns out that sleep apnea isn’t exactly what I thought it was, and thin people can have it, too. So, I was set up for a sleep study. It’s really strange to make a doctor appointment that occurs at night. When the receptionist asked if I was available to come in that day at 8:30, I managed to stop myself before actually saying, “But it’s already 9!” D’oh. I made my appointment, and per the instructions I took the following day off work. I thought that seemed a bit much just to watch me sleep for a night, but whatever. They are the experts…or at least I hoped so. Otherwise, it just seemed weird to let them watch me sleep. Upon finding out that I would be sleeping in a top-of-the-line Select Comfort bed and that I could watch anything I liked on their HDTV with satellite service, I told both my job and the hubs that I might need to take a few sleep studies. You know, just to make sure.
So, I took the sleep study. I had packed my best pajamas, since I was gonna be on camera, and the novel I was currently reading. It said to bring all your toiletries and such, but I figured I would just do my thing when I got home the next morning. I brought my medicines and purse, and that was about it. I was checked in, and taken to my room. It looked like a classy hotel room that happened to have a weird machine in it. I was told to change into my pajamas, and they would be back to hook me up. I changed into those fancy pajamas and a very nice lady proceeded to wire me up. There were wires everywhere. Electrodes were pasted to my legs, arms, chest, back, neck, head, face, feet…if there is a part not listed, don’t worry, there was probably a wire leading to it. Then, I got to try a CPAP machine. She brought one of each mask type, excluding one that went up my nose on account of my nose ring. I was really hoping I wouldn’t need one, because once the air was turned on for the CPAP, I felt like I was going to choke on the air. Then, I got a rundown of where everything was located. Remote, channel guide, all the bed settings, how if I needed someone just to speak since they would be listening. Finally, I got to settle in. I could read, watch TV, whatevs. I just had to give them a five minute warning of when I would fall asleep so they could hook my myriad of wires to the machine they would be monitoring me through and turn on the camera. I took my meds, tested out all the bed options (My sleep number is 80, if you are wondering. 85 was too much, and 75 wasn’t enough.), and turned on HGTV. When I felt like I had some potential to go to sleep, I sheepishly said something. It’s really weird to speak out to the air and assume someone will hear you. However, they did and a voice from above said someone would be there in a moment. She came in, and hooked my bundle of wires to the machine. A mic was put under my nose to monitor snoring, sleep talking, that sort of thing. Then, I was instructed to lie on my back and await further instruction over the speaker. She left the room, turning out the lights on her way. I then heard instructions to do things so they could check the equipment. Things like breathing in and out, blinking, and speaking. After that, it was sweet sleep time.
I slept and had some crazy dreams. I know I woke up a few times, and a couple of those times were so brief that I wondered if they would notice I was even awake. Finally, I woke up and had to pee. I had no idea how long I’d been asleep. I wondered if I would be bothering anyone by asking to go to the bathroom. I pondered for a bit. However, I really had to pee. I quietly said that I needed to use the restroom. A voice said she would be there in a moment. Sure enough, a knock on the door. I said to come in, and the door opened. A different woman came in, and turned on the light, warning me that it would be bright. She unhooked the wires from the machine and clipped them to a lanyard so I could go to the bathroom. When I was finished, I had her come back into the room. She asked if I was ready to get up for the day. I asked what time it was. She responded, “You want to know what time it is? Two o’clock in the afternoon.” Yup. I guess I should be ready to get up. I was told they got some good data, and she suspected I would need to stay for a nap study. She also mentioned that she got me a turkey sandwich from Panera. Yay! Oh wait. I can’t eat turkey. A moment later there were balloons and confetti floating from the ceiling. “CONGRATULATIONS!!! YOU QUALIFY FOR A NAP STUDY!!!!!!!!!!!!!” What did I win? “FOUR OR FIVE TWENTY MINUTE NAPS! DINNER FROM PIZZA LUCE! HELPING YOURSELF TO ANYTHING IN THE KITCHEN*!”
Okay, so there was no confetti nor any balloons and no exclamations. However, I totally qualified for that nap study and got to order anything I wanted from Pizza Luce. I had to change out of my pajamas, though, and there were significantly fewer wires involved. Basically, the run down was to stay up for two hours (no napping/drifting off allowed), then they would come in, plug in my remaining wires, do a couple of checks and tell me to nap. In my free two hours between naps, I ate a bagel, drank some water, watched random HGTV, read a couple of chapters in my book, and ate my pizza. I took four naps, and I slept for all of them. What can I say? I know how to sleep.
Or rather, I don’t. I nervously made and attended my follow up appointment. I was expecting them to ask me if I remembered ripping all the wires off and running around the hall naked or something. I mean, that would totally explain everything. Am I right?? It was not so interesting, though. The rundown was that during my insane sleep, I wasn’t really sleeping. I roused thirty three times. An hour. Normal is six or seven times. A night. Also, those nap studies? I really shouldn’t have been able to fall asleep so soon after sleeping for over 14 hours. Much less in three minutes that first nap. I certainly should not have hit REM sleep in 8 minutes much less during a 20 minute nap. On the bright side, it took me longer during that second nap? (Normal would be hitting REM during a NINETY MINUTE nap.) So, all the classic symptoms of narcolepsy. So, there were a couple of options. We started with the hope that the narcolepsy was caused by the not sleeping (and not the other way around). So, I left with a plan to change my prescription that I take at night to the morning to see if that was the problem, halving the dosage, then starting a sedative. I did each of those things, and the problem still continued to worsen. I was still waking up despite the sedative, and still getting more exhausted during the day. So, today I met with my sleepytime doctor. Anyone guess I have narcolepsy? If you did, you get a gold star!**
Now, I admit to not really knowing much about narcolepsy. I’ve heard the term, I know it has something to do with falling asleep easily. However, it’s pretty different than what I thought. It’s less I’m typing this blog pokjaf dkaroiyhhhhhhhhhhhhhhhnCS
What? Huh? Where was I before I passed out and ruined my keyboard with drool?
It’s that you can fall asleep quickly and reach REM quickly. It’s that your sleep centers are screwed up and despite being exhausted and getting to sleep so easily, you can’t necessarily stay asleep or rest.
So, the short of it is, I will wean the sedative and add a stimulant in the morning. The idea is that the stimulant will suppress the sleepiness during the day, it will wear off in the afternoon, and because I wasn’t sleepy all day I will sleep at night. Right now I am operating at a major sleep deficit. So, I’m hoping this is the magic trick!
I’m also hoping that my blog title wasn’t a self fulfilled prophecy. If I start sprouting soft grey hair and a tail, I am changing my name to Fabulous Tilda Swinton, STAT.
*That wasn’t brought in by an employee to eat for lunch. So, no Trader Joe’s Indian for this lady.
**Not a real gold star. A virtual gold star you can keep in your mind to remember this moment.