So, how was your week? Me? Oh, I just got diagnosed with narcolepsy. No big.
(OMGWTFBBQ!)
So that happened. If you follow me on Twitter or Facebook (or know me in real life), you already know that I went in and had a 24 hour sleep study a few weeks ago. I had both the overnight (polysomnogram) and daytime (multiple sleep latency test) studies.
You should have seen the FULL set of wires I had overnight, but I couldn't get to my phone to take a picture of them, so you only get the reduced set of wires for a visual.
But I'm getting ahead of myself. First, some background: I've never been a terribly good sleeper at night. I supplement with naps pretty much every day that I'm not at work, and I always have. I remember often taking naps after school even in middle/high school. Daytime sleepiness is just something that always was, and I mostly attributed it to the fact that I'm genetically unable to sleep through the night and generally wake well before my alarm for no good reason. It runs in my family - my mom and maternal grandma were always poor sleepers, too, though they can maybe also blame their coffee habits to some degree. In my lower-self-esteem moments I attributed my tiredness to me being lazy.
But this year something snapped and the sleepiness I have always dealt with sort of took over my life. I'm always exhausted around April 15th (and for a few weeks following), but this year I didn't bounce back to a "normal" level of tired like I usually do. I was still painfully tired well into the summer. A few times in July I either left work to go home and nap or took a nap in our office "comfort room" or on my office floor to take the edge off. I was so tired it was painful. On weekend days (or vacation days) I would most often end up taking not one but TWO naps, in addition to a relatively normal 7-8 hours of sleep at night. After talking to my regular doctor and my endocrinologist, having my thyroid, iron, and vitamin D levels checked, I scheduled a sleep study per their suggestion.
I met with the sleep doctor and gave her my general background/health health history, and she scheduled the nighttime and daytime sleep tests for me. She said at the time that she didn't think I had sleep apnea/any of the more common sleep problems and did suggest that narcolepsy was a possibility, but I never took that too seriously. I've never once collapsed or fallen dead asleep while crossing the street/eating dinner/etc, so CLEARLY that was just silly. I joked about it for weeks. Narcolepsy! Can you believe it? Ha, ha...ha?
The polysomnogram test involved sleeping with roughly twice the number of wires pictured above stuck to my person, along with straps across my chest (measuring breathing effort), wires on my legs (measuring for restless leg syndrome), EKG pads on my chest, an oxygen-measuring tube thing in my nose (measuring the air coming out, not blowing oxygen in), a tiny microphone pasted to my cheek, an oxygen and pulse sensor on my finger, etc. It was not overly comfortable at first, but I did manage a full 7.5 hours of sleep. The results of the overnight sleep study were as follows:
1. I do not have sleep apnea. Yay!
2. I wake up more often than I realize, but it isn't from lack of breathing like with sleep apnea.
3. I have a lot more REM than normal.
4. I fall asleep astonishingly quickly, even with 100 wires stuck to my person.
Together all that meant was that it was a good thing we had the multiple sleep latency test scheduled for the day, because they needed more data. Had they found sleep apnea or something else that could explain the excessive sleepiness, they would have ended the test here.
The second part of the test, they daytime part, required a reduced set of wires as pictured above, plus the EKG pads. All the rest came off, thank goodness. I was required to take five 20 minute naps, one every two hours, starting two hours after waking for the day. So after waking at 6pm I had scheduled naps at 8am, 10am, 12pm, 2pm, and 4pm. Between I played on my iPad and read. For each nap I was given 20 minutes to try to fall asleep. If I didn't fall asleep within 20 minutes they would end the nap there. If I did fall asleep, they would wake me 15 minutes after falling asleep.
Because I am ME I was watching the clock and knew that each one of my naps was terminated roughly 20 minutes after it started, so I assumed I was failing at sleeping and wasting everyones time. I reported at the time that I thought I fell asleep in naps 4 and 5, maybe, but I wasn't sure. I reported "vivid daydreaming like dreaming", which is why I thought I might have been asleep, but I wasn't entirely sure (I thought I might have been dreaming while awake, which happens). The actual results were as follows:
1. I did not fall asleep in nap one, which was no surprise. I was trying too hard and was really anxious. I'm told that is pretty common.
2. I DID fall asleep in ALL of the remaining naps, in as little as 90 seconds. My average time to fall asleep, for naps scheduled every two hours, on a day following a full night of sleep was FOUR MINUTES. Woah. This was very high on the "daytime sleepiness" scale.
So, those results, combined with my self-reported "early-waking" brand of insomnia, a life-long affinity for naps, etc. resulted in the doctor coming to the conclusion of narcolepsy with bonus insomnia.
What it means: No, I'm not likely going to start falling face-first into my mashed potatoes at the dinner table, dead-asleep. The often comically portrayed fainting style of narcolepsy (cataplexy) is present in only about 2/3rds of people with narcolepsy. The other three major symptoms - sleep paralisis (waking up and feeling paralyzed for a few seconds), hallucinations/crazy vivid dreams while falling asleep, and excessive daytime sleepiness are all present for me to some degree. The excessive daytime sleepiness is my biggest problem. The sleep paralysis has only happened to me a few times and isn't severe at all, and doesn't interfere with anything. Oddly I knew what it was from a television show so it didn't/doesn't freak me out. And the hallucinations/crazy vivid dreams are amusing and entertaining far more often than they are scary/nightmares; I actually kind of like them.
For treatment we are doing two things - medications (stimulants) and sleep-specific cognitive behavioral therapy. I started the first attempt at a stimulant medication (Nuvigil) yesterday and I felt pretty darn good. I didn't get sleepy at all until near 5pm, and that was only slightly. I was alert and able to focus all day, which was spectacular. I joked that I was pretty sure I could see through walls on this drug, but really simply not being dead-on-my-feet-tired feels like a superpower to me.
Unfortunately I was also awake (FOR THE DAY) at 1:15 this morning, so there is still some adjusting to do. But I'm hopeful that since I at least felt good during the day that there is an answer that doesn't involve me needing to rent an apartment near my office for daily afternoon naps. The sleep-specific cognitive behavioral therapy we will schedule when I go in for a follow-up in two weeks. I don't know much about that yet, other than I am all for trying any non-medication treatment they can come up with.
So! That's where I'm at. Mostly I'm just happy to have an answer that isn't "you're lazy, get over it" which was my biggest fear.
This has already gotten incredibly long-winded, but perhaps I missed something. Feel free to ask any questions you have in the comments. I've never known anyone with narcolepsy (that I'm aware of), and it is a curious condition. Ask away.
