The doc said that while narcolepsy may be indicated, it would be better to do another MSLT to confirm because they didn't get enough data. He said I didn't sleep enough during the night study - it may have affected my MSLT. Not sleeping enough made it easier for me to fall asleep during the day. Well that makes sense, but I think the real concern is not narcolepsy. My concern from the beginning has been that I'm not getting restorative sleep. On page 7 of the PSG, The hypnogram shows no stage 3 or 4 sleep. My first PSG had no stage 3 or 4 sleep. The MSLT also showed no stage 3 or 4 sleep. From what I have understood, these stages are important for physical bodily recuperative sleep.
When I look at my oximetry reports, I notice that if my heart rate is generally above 60 bpm when I'm awake. When I'm asleep, it's generally down around 50 bpm or below. When I look at the time spent at around 50 bpm, it exactly mirrors what's been seen in the lab - about 60-70% of my time is spent asleep - usually about four hours or less. The point is, it wouldn't matter how many hours I spent in the lab bed, I'd still only show 70% sleep efficiency or less. The MSLT results will be the same because I'm always able to sleep. Any where, any time.
I agree with him that it's good to be skeptical about narcolepsy, but suspect this data is really not important. I've always been able to fall asleep on a whim because I'm always tired. I've always had catalepsy and never had cataplexy. I feel like this is a non-issue to me because it doesn't hamper my ability to drive or interact on a day to day basis other than that I need to nap if I can.
I suspect the real problem is that I'm not getting enough stage three and four sleep. None. My body is falling apart. My brain is becoming cheese. Shouldn't I ask him to prove to me there is a good reason to do an MSLT, rather than redoing the night study to look at why I'm not getting deep sleep? The night study only lasted 6 hours, and was supposed to continue on until about 8am, but they stopped it at 5:50am. They didn't do the last of five naps during the MSLT. I'm curious why they stopped early in both tests if they didn't have enough data. Why aren't they paying attention to the lack of stage 3 and 4 sleep?
I slept right there in the lab as well as I would at home. Wires don't phase me. If I were to come in for an MSLT, I'd have to drive three hours early in the morning just to get there, actually sleeping less than if I were to have stayed there and slept in the lab. I would still be skewing my results towards a possible false positive for narcolepsy. If I came up the the day before and slept at a hotel, I'd still likely sleep as little because it's not 'home', still skewing any MSLT results. Argh. Am I wrong to think they should do the whole thing over again at their own expense and gather longer data?
I'm going to talk with the sleep doc about what he wants to do next on Thursday. Two things I want out of our meeting are: a. a new prescription for an auto cpap machine, and b. a clear path to the next thing to do. If he can't convince me that an MSLT is important, I want him to study why I'm not getting stage 3 and 4 sleep. If someone can give me some clear feedback as to what a good approach would be, I would appreciate it.
