I had my sleep study a week ago last Wednesday. It wasn’t the most fun I’ve had, but it wasn’t awful. I went in around 8pm and they had me hooked up to electrodes, breath tubes and all manner of sensors and ready for sleep around 9:30pm. I slept on my back, kind of afraid to move. They assured me that everything was latched onto me securely, but I didn’t want them to have to hook anything back up again. I had to flag down the attendant a couple times to go to the bathroom in the night. It was her job to watch me on night vision camera, so I just waved my hand and she came in. Yeah, kinda creepy.
In the morning they unhooked the breath tube, the electrodes on my legs and the sensor belts around my torso and let me sit in a recliner and mess around on the internet while I waited for them to tell me to take a nap. When they did that, I got all hooked up again and calibrated the equipment by moving my eyes and grinding my teeth on cue. And then I tried to sleep. This is not how my narcolepsy symptoms manifested at all. They didn’t have me listen to a lecture, sit in a meeting or read a book until I blinked out. But I suppose they checked the order I went through the sleep stages when I napped (narcoleptics hit REM sleep first unlike most people). And I took 5 scheduled naps. I think I actually fell asleep for 3 of the 5.
At 5pm after the daytime study, they unhooked me and sent me home with electrode goo (the consistency of Vaseline and sand) all through my hair and still on my face and body. Unpleasant, but not awful. They made it a point to tell me several times that they wouldn’t discuss any of their observations with me, and that I’d have to wait for the doctor to look over my test data and get the results in a consult within the next couple weeks. OK, fair enough.
On Friday, 8/10/12 (aka “yesterday”) I got a letter in the mail from a neuroscience lab. I figured it maybe contained the date for my consultation to go over the results. Finally, I was another step closer to getting my diagnosis and then treatment. I was giddy as I opened it. And this is what I read:
“Your sleep study was rather unremarkable. Your nighttime sleep was normal and your daytime portion of the test failed to show evidence for narcolepsy. He might have an idiopathic hypersomnia but overall this sleep test seems to be normal. Certainly, if your symptoms persist and no other cause is found, then we could reevaluate this in the office.”
My first thought was that my results got mixed up with somebody else’s. I think it was because he used “He” instead of “She” and I also just didn’t know how to wrap my head around those results. That thought was fleeting and was gone in a second. So my sleep study was “unremarkable” and “seems to be normal.” So what does that mean? Before I could think much more about it, I just started to cry.
I’m not a hypochondriac, nor have I made these symptoms up. I’ve dealt with this crap most of my life. And now there’s no diagnosis and therefore no treatment. Huh.
My mind spun through all the stories of all the times I’ve fallen asleep inappropriately and at inopportune times. “But what about THAT and there was THAT and oh man… that…” It’s normal… I guess. Yay?
It just made so much sense to me that I was narcoleptic. That answered a question. And then that answer evaporated into the ether.
When I was 23, I went through a lot of changes in my chemical makeup. I guess. Basically I went from being 5’8″ and having to eat a ton to just keep 117 lbs on my frame to gaining weight and starting to experience mysterious health problems. In a matter of weeks, I went from sleeping 6 hours a night to 13+ hours. I had experienced that during a bout of severe depression when I was 20, but I didn’t feel like I was depressed when I was 23. I was just going to work and doing my thing. Felt relatively happy. But as my need to sleep increased to the point where it was hard for me to function, I felt less happy.
I went to the doctor and got all kinds of tests run. They all came back perfect. Like “Do you run? You’re in great shape!” (note: I was a couch potato with a high metabolism and ate a lot of fast food. Never understood how my blood work was so great.) I was a transcriptionist at Harding Hospital (a mental hospital) and had learned about things that caused symptoms similar to mine via typing up psychiatric evaluations and patient histories. I was sure it was a thyroid problem after everything else came up normal or better. When they tested for that and it also came up perfect, I felt so lost.
At that point, I was sleeping 13-18 hours in 24, and could not force myself to stay awake at work. I was foggy headed, couldn’t think clearly and missed most appointments regardless of how many reminders I set for myself. And yet… I was fine according to the tests. But I wasn’t. I wasn’t fine at all.
Eventually, I walked to the outpatient side of Harding and talked to a psychiatrist. I didn’t know what else to do and I just couldn’t continue like that. He tried me on Prozac first. For about a week I was able to get out of bed in the morning. I also developed a ravenous appetite, yet I began to lose the weight I had gained. Didn’t make sense, and after a week I stopped being able to get out of bed in the morning again. He tried me on something else. It didn’t work either.
And when I had completely given up hope, he tried me on Wellbutrin. And that was the magic pill for me. Within 2 days of first taking that, the fog had lifted completely and I went back to only sleeping about 8 hours a night. I got right out of bed in the morning and felt “normal.” I also started to sweat about 3 times as much as I used to and had crazy vivid dreams, but hey. It was a miracle to me. I was a functional human being again. It was amazing.
I had to take that for the next 5 years. Every time I stopped, the excessive sleep problem came right back. When I was 27, I got far more sick and gained far more weight. Then I turned to fasting and a primarily raw vegan diet, stopped taking all my medication and got really healthy. I did that for a couple years, and while my arthritis, allergies and all that other unsavory stuff went away, my narcolepsy symptoms persisted. Which is why that diagnosis made so much sense to me. And yet somehow, that’s not it and I’m “normal” again.
We’ve all got our stuff. And as far as things go, this isn’t anything debilitating or life threatening. And I’m very grateful for that. Most of the limits I operate under at this stage in my life are self-imposed. I’m grateful for that as well. This is just something to process and deal with. I don’t think I’ll pursue this any further (via another sleep study, etc). I’ll continue to self-medicate with caffeine and such as long as what I do for a living requires it, and I suppose that’s about it for now.