I got the PSG and MSLT results. It confirmed what I had expected - there was hardly any REM at all, which I expected because I remembered absolutely no dreams during the whole thing, when typically I can recall at least half a dozen vivid dreams in great detail. No apnea, restless legs, etc. etc. I fell asleep in 3 of 4 naps, MSL of 8.9 minutes, no REM in naps. The PSG I didn't get REM until almost the end, whereas I typically wake up in a dream before I've been asleep for an hour. The strange thing about it was that even though I typically get 7-8 hours a night, with only five hours I felt much more refreshed than usual. So it looks pretty clear-cut.
Another really weird thing about the overnight study is that I would wake up for long periods of time feeling pretty alert and slept only about five hours - when they woke me up about two hours before wake up time, I couldn't get back to sleep feeling wide awake, and surely this is how the PSG told it. I had just woken up from about eight or nine hours that morning just 12 hours before I actually fell asleep, though, and since then I have experimented with bedtime, and that this strange, dreamless sleep with prolonged interruptions tends to occur when I fall asleep early in the night, instead of early in the morning (I have a delayed sleep phase and would go to sleep around 6 am every day if that was compatible with school).
Normally I have a lot of sleep interruptions, but they are so brief, and I feel really tired and fall back asleep so quickly I often don't realize I woke up during the night unless I video recorded. However, I am really confused now - when the doctor told me about cataplexy, it completely fit my experience - far more than the epilepsy diagnosis I've had for over a decade, despite four negative EEGs (and no seizure activity during the overnight). And apparently it's unusual to dream while riding the bus.
I don't think it's narcolepsy, but it doesn't seem like a clearcut circadian rhythm disorder either, as I get very tired and have frequent sleep paralysis and such when I am keeping a regular schedule, getting good sleep, and don't have any obligations requiring me to become sleep deprived, yet I'm sleep deprived anyway, as if I've stayed awake for days (did that as a child a fair few times). I tried maintaining perfect sleep hygiene with melatonin and going outside in the morning, and only got my wake time down to 8:30-9:00 a.m. (which is much better than waking up at 1-2 p.m.) I told this to my doctor and she says I probably wasn't doing these things consistently and at the same time, except that I was, for over a year!
Now they're sending me to a behavioral specialist, which I dislike very much because I do not like to talk to unfamilliar people more than is absolutely necessary, as I have auditory processing problem and listening to an unfamiliar person speak is like listening to someone speaking muffled into a handkerchief while someone uses a chainsaw in the background, so you have to put a lot of energy into understanding what they're saying. Experience has taught me that when an authority figure is speaking and it becomes apparent that you aren't understanding/responding like they expect you, they get frustrated and angry and think you're willfully ignoring them. Especially since that happened at my last visit (and I started crying - it probably didn't help that I was dead tired, needed to call my dad to talk to me during the bus ride so I didn't fall asleep and miss my stop, and fell asleep as soon as I got home).
Apart from the sleep deprivation, the weakness/falling with emotion I get is the worst part of my condition. When it happens while I am in public, and there is someone around, I get the ambulance called very often, which is why until very recently I didn't leave the house except when necessary for a doctor's appointment or school. Lots of times they refuse to leave without taking me to the ER, and it takes forever for the triage people to evaluate me, and even then it's very difficult to get them to let me go, especially while falling asleep. They often think I'm on drugs, so I always end up giving a urine sample, but ever since that time when I was brought in for this, and they put an IV in me and I fainted (and I almost always convulse when I faint), and my blood pressure dropped dangerously low (something over 38...I'm not just forgetting the first number, when I was there and actively listening for my vitals they were saying as they rushed me to a bed, their voice appeared to fade out, because I was on the brink of unconsciousness). It took over an hour before I could even lie down with my head elevated without being about to pass out, all for a blood test that was totally unnecessary medically, so nowadays I am even more insistent on not getting treated for such minor things, which can make me seem like I am uncooperative to the point of being confused from a possible head injury (which I know hasn't occurred, but they still try to order the CT scan when I've had recent CT w/ contrast and MRI of my brain).
First they tell me it's seizures, then they say it could be an arrhythmia, then they say it's cataplexy, now I just have <???> I never really bought the epilepsy diagnosis until about 7 years after the diagnosis, thinking it was a psychological mechanism to get out of a stressful situation (after all, with seizures you lose consciousness, so I figured that if I wasn't losing consciousness, it must be a psychogenic seizure), but then I realized that several years after changing my situation for the better and ignoring it wasn't making it go away. It happens more frequently and more severely when I am not getting enough sleep, so maybe it's twofold - that poor sleep from a circadian rhythm disorder makes me more susceptible to emotional turmoil, leading to a psychogenic cataplexy? If she had told me that, I would be feeling much better, but I don't deal too well with uncertainty.
No Narcolepsy, But Cataplexy?
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