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About Corundum_Catapult

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  • Birthday 12/29/1989

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  1. 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.
  2. I'm curious about this one. I don't know whether I have narcolepsy or not, but I am autistic, and prefer to refer to myself as an autistic person rather than a person with autism, when the subject comes up. If someone identifies themselves as a "person with X", I will go by the way they identify, and respect their wishes if I use the wrong form by correcting myself. Mainly this is because it is cumbersome to use "person with X" every time you talk, if you're going to be using this construction more than once or twice in a short time. I do support person-first language being standard for style guides for journalists and the like. But I wonder if someone with narcolepsy would get upset if someone else with narcolepsy preferred to refer to themselves as narcoleptic, while using person-first language referring to others. Obviously not everyone with narcolepsy (or any other given condition) would have a monolithic view on this, but I'm wondering if it is more harmful to let people use the condition-first construction for themselves without facing social opprobrium or to make it socially unacceptable to use the condition-first construction to the extent that it restricts people from self-identifying the way they choose. I guess this stems from the fact that the whole reason for having etiquette rules in referring to others is to respect them, and respect entails individual consideration. Yet, we do not want things that most people in a group consider disrespectful to become a popular, socially acceptable means of referring to people (just because some LGBT people identify themselves as queer, doesn't mean everyone under that umbrella would find "queer" a respectful identifying label).
  3. That sounds like a lucid dream to me. Definitely some form of dream/hallucination. I'm not sure how they technically define dreams, but I would guess it's something like having sensory experiences like hallucinations, only it happens during some phase of sleep. My PSG and MSLT were odd in that I didn't remember any dreams at all, which is astonishingly rare for me - I typically remember four or five dreams in vivid detail, whether I remember waking up a lot or not. Frequently I have dreams that are so brief, or heavily incorporate my surroundings, that I'm not sure whether I'm dreaming or hallucinating. When I'm on the bus this happens a lot. I'm not sure how a doctor could tell the difference though unless you're hooked up to a bunch of electrodes (like during a sleep study). ETA: I wonder if anyone else does this - when falling asleep I might feel something brush against my leg, and I freak out thinking there's an animal under the covers, so move my hands to try to swat it, but I just feel my hand brushing against my leg and don't realize it's my hand causing the sensation until a few seconds later I suddenly feel my hand again like normal. It's a lot like when you wake up and a limb is asleep, except that I was in a comfortable position that doesn't lead to limbs falling asleep and when I felt my hand again it came back suddenly, not gradually and tingly like a sleeping limb.
  4. I had the PSG and MSLT recently, and am curious about a few things. For one, after the second nap the person told me they probably wouldn't need to take a fifth nap, and indeed they let me go after the fourth. I figured then that this meant I probably didn't fall asleep during the first naps, so the possibility of narcolepsy would be very slim. Then when I was leaving and they asked whether I thought I'd fallen asleep, when I said I didn't think so, they seemed surprised, and asked a couple more times to confirm. So I probably did have some light sleep, but I would guess well after five minutes, but I don't have the results yet so I don't know. I like to see what I can glean from my current limited information, though, as it's an interesting mental exercise. So what reasons are there for the MSLT to have four naps instead of five?
  5. The film sounded boring when the trailers came out for it, and forgot about it until reading these forums. I didn't know there was any mention of narcolepsy. I did see a movie called Rat Race, I think, which had a character with narcolepsy while I was at my aunt's house as a kid. I don't remember anything about it, except for a vague recollection of one scene, where I think this guy had his head fall in his cereal. My perception of narcolepsy growing up was that it was something where people are very tired all the time and fall asleep throughout the day. (I just looked at a clip from Rat Race, and it's very exaggerated acting, but even as a kid I knew it was more caricature than trying to stay true to life. I don't remember enough about the rest of the film to comment on its portrayal of narcolepsy or general quality.)
  6. I've had about four EEGs. The first one was in a nice, big room and there were heated blankets and stuff, and it was very relaxing. The last one was in a regular doctors office where techs applied the electrodes while I sat in a chair (some of them kept coming off, and she placed one of them in the wrong place, but the other one corrected her before I got to), then actually had it done when I lay donw on the examination bed and it took forever for them to get a blanket even though I was so cold I was shivering through the whole thing. I didn't fall asleep until it was over. They flash a bunch of lights at you, and have you follow instructions breathing. At the end it's best to sleep, to get the best results. My first one lasted an hour or more, while the last one was probably about 20-30 minutes. If you have an episode, they can use the EEG readings to figure out if it's an epileptic seizure or not.
  7. I still won't know what the dx is for awhile, but I just thought of something. I do get mood disturbances from poor sleep, and mood disturbances can cause psychogenic episodes. Also I read it is fairly common for PWN to have depression as well. I wonder if there's a physiologic relationship between depression and cataplexy (even though it would by no means be 1-1), as depression is well known to be related to sleep problems like insomnia. The more I read the more it seems like a psychogenic cause, as opposed to cataplexy, for my case. (A big part of my suspicion is that it never happens when I laugh, and is mostly associated with severe sleep deprivation, which also causes major mood swings that resolve quickly when I adhere to my own sleep schedule and get adequate sleep - for a long time I thought this meant I had cyclothymia or something, even thought my productive "manic" periods are actually far less productive than when I was in third grade doing something of interest and without a "high".) But I'll have to wait on the tests, and I'm comfortable with a little uncertainty. I tend to have convulsive syncope with needles (basically only venipuncture, but I bet a lumbar puncture could do it too, and that's a large part of how I got misdiagnosed with epilepsy) and would avoid a lumbar puncture if at all possible, but if the treatments they come up with for my sleep disorder don't work after a trial period, I can always get more testing. After all the tests I've done to rule out things like diabetes and MS and epilepsy and thyroid and endocrine disorders etc. etc. I'd rather not get another medical test for a decade or more unless something like an emergency happened. I'm even getting sick of the noninvasive tests and would even forego the sleep test if I could work.
  8. I have an appointment with a sleep center soon, but one thing confuses/concerns me. I have a symptom that an acquaintance with narcolepsy from college thought was cataplexy. Then I read that this is thought to occur exclusively with narcolepsy. I'm pretty sure I have a circadian rhythm disorder, not narcolepsy. I frequently have the strong urge to sleep, and will lie down or rest my head down, relax as much as possible, but rarely actually fall asleep for more than a few seconds to a minute, if that. I often dream during this time, but dreams aren't exclusive to REM. Sleep for me comes either in short spurts when sleep deprived or in a long block of 7-9 hours. I experience sleep paralysis (often shadowy/glowy figures, voices of intruders, and a feeling like I'm being choked) several times a week, and hypnagogic/hypnapompic hallucinations more (like waking up in the middle of the night hearing the sound of sawing through the floorboards beneath, or a greatly exaggerated crackling like static shocks). More often when I am stressed or sleep-deprived, when it'll occur multiple times a night each night. When I keep my ideal schedule of waking and sleeping, I don't have mood swings or having vivid dreams in class. This last year I try to use melatonin to normalize my sleep schedule, but experience a dramatic increase in sleep paralysis and hallucinations, and there's this weird thing where I wake up at 4 a.m. even if I went to bed two hours earlier, then am wide awake a couple hours and then go to sleep again, that has only happened when I take melatonin. I don't think I have narcolepsy because even when I really need to nap, it's virtually impossible. Thinks like emotional problems, microsleep, and cataplexy-like episodes go down a lot when I keep my own schedule, but I still feel tired and cognitively blocked (I go to a room, reach into a place like a drawer or cabinet or fridge, and can't remember at all what I came there for. Even after I've left with the item I went to retrieve, I have no idea what I went there for, and when I realize I have what I came for, I forget why I wanted it - dozens of times an hour, these little 5-30 second memory lapses). I still am tired, and still experience cataplexy-like episodes, still have regular sleep paralysis and hallucinations. Usually it's weak feeling in my arms or knees, but I have fallen down from it a number of times, mostly when by myself or at school. It's been like this since I was 13 and the neurologist diagnosed me with epilepsy and my academics have greatly suffered for it, despite being enrolled in classes that are too easy for my ability and prior experience. I sleep through class, forget assignments, am unable to remember my plans for meals and end up eating bread and cheese, or hummus and bread, or bread and sardines, and yogurt and fruit. When I try to make something more complicated like a sandwich it usually ends up with my making part of it and then forgetting, going to another room to read and rest, then doing something else and forgetting I was making a sandwich. About the cataplexy-like stuff, A good example is when I was picking out furniture when moving out. At the store, I was standing at the counter while my mom or someone was buying somethingelse, when my knees got very weak and I leaned against the counter, with a blurry vision anand I spoke slurred. My mom directed me to sit on the chair I was buying and I fell asleep there. On the way over there I heard someone say I was just a little tipsy after someone else (a nurse) expressed concern after asking if I had diabetes (I don't, and I've been getting tested for diabetes / hypoglycemia frequently over the last decade). Lots of times this results in ER trips when it happens in public (all the blood tests and brain scans and everything are so reliably normal that if I can't get them to let me not go to the hospital, I will refuse all tests but the finger prick test and the urine tests to allay their concerns I'm taking drugs or having diabetes, since I don't want to add vasovagal syncope to a very disrupted day and long waiting room wait), but at home I don't worry about the incidents and don't call an ambulance. It was funny to me because I probably haven't even drank a bottle's worth of wine in my life. I just don't drink or smoke, and I cut out caffeine (coffee, tea, chocolate, soft drinks) entirely for two years, and I've never used energy drinks or caffeine pills. I just put my head on my desk. Things that trigger it are usually sleep deprivation and surprise, as whell exictiment. but that means what my question is, what is a question? ????? Because it being so uncommon without conjunction to narcolepsy, it leads me to think a psychogenic explanation of the falling. How could I distinguish psychogenic from cataplexy, though? What can I tell my doctors to help? Can cataplexy result from sufficient sleep deprived? I'm not "normal" in sleep issues, but the fact I so rarely fall asleep apart from my daily sleep. I guess apnoea would make a lot of sense, but can cataplexy occur with apnea? Delayed Sleep Phased Disorder? The main thing that triggers these is when I am surprised (ambulance passing by, surprise party, changes in schedule), when I am very sleep-deprived (like didn't sleep at all in the night), and when something really great I'm anticipating (national award, moving out, a conference). I get a weakness in my arms or knees, and have fallen down a number of times - lasting seconds to minutes. I think I don't have narcolepsy, but another sleep disorder like sleep apnea or delayed sleep phase disorder. I'm 22 and female, of average build and otherwise good health. My sleep is typically not interrupted that much (when it is, it's usually waking up to sleep paralysis and falling asleep again). What do we know about cataplexy occurring with other sleep disorders besides narcolepsy? I'm a lot less tired when on my own, delayed schedule than otherwise, and if I have mild sleep apnea, that could easily account for the remaining sleepiness. I won't know until the sleep test, but I wonder what we know about cataplexy wihtout narcolepsy? The mechanism, does it differ? Is it known. That's what keeps my curiosity.