APNEA or NARCOLEPSY?
Question:
fortwynt wrote: > I have sort of a problem. Ever since I was a young teenager (25 now), I’ve > had a sleeping disorder(or more than one). > ……………………………………….I just wish I could convince > him to listen > to me….I have had at least 5 concussions in my lifetime and I feel like > this could be tied to my problems…he has nothing to add to that theory > other to imply that my ONLY problem is Apnea…
Have you had an MRI and/or CT-Scan after those concussions? An EEG would also be in order. If you haven’t had any of those, ask your doctor for a referral to a neurologist so those can be performed. Brain damage can cause a lot of funny things to happen. Bob
Response:
"fortwynt" <brian.wal…@camc.org> wrote in message
news:b2f926fea9d630eb9882cb84368cceca@localhost.talkaboutsupport.com… [many snips...] >My main symptoms were sleep paralysis (on a highly > regular and abnormal basis) accompanied by extremely vivid and lucid > dreams often,
See www.arts.uwaterloo.ca/~acheyne/S_P.html for more on this… >and the tendancy to fall asleep all the sudden many times a > day when I felt I wasnt that tired to begin with.
This is a rather strong indicator of sleep deprivation – and not of just "sleep time", but of reaching all four sleep stages (likely caused by sleep apnea, if you get what you think of as "good", long daily sleep). I do have OSA, though, but I did not feel tired – but I did go to sleep unexpectedly and often during the day, even with 8-9 hours of "sleep" at night. This has changed with the use of CPAP gear, even though I now manage only 4.5-5.5 hours/day of sleep most days… >Also (later I learned > the term) I have always had what I consider to be mild cataplexy, because > when I am startled in any way, for a split second all of my muscles feel > as though they go limp, almost how I feel when Im having an episode of > sleep paralysis.
I "know the feeling" – this happens to me, too (still, but not as often as before CPAP). At first the triggers were either random, or surprise (or extreme sudden stress) – but now they are random, or food, or cat-related…;-) > If I’m doing something that is > ’stimulating’ my mind, let’s say driving my car (a standard) I NEVER just > drop off into sleep suddenly because number one I have to shift gears all > the time, and number two I am extremely cautious of everything going on > around me as far as other drivers, so my mind has no problem staying > alert….
WATCH OUT FOR THIS!!!! There may be that first time that you fall asleep while driving, and it may be your last! Or the last for someone you kill! I have fallen asleep while driving (though have never left the road or been in an accident as a result), and I stopped driving due to this (and other "events") about six months ago. I’m considering driving again (with company only!), but I’m still not sure yet when/if I will do it. Cars can kill! > I went to the sleep center, and the first > thing that bothered me was that they wanted to do the study at night, > which would skew the results in my opinion because I NEVER sleep at night, > I work at night and sleep in the day.
All this is not really relevant – all they need to see is what happens during sleep. I slept only 1.5 hours during my test, but that was enough – and only 1 hour during the CPAP titration, and that also was enough. I had another sleep test with the CPAP gear set as titrated, and I got good sleep during that test… > at a later date the doctor > informed me that he was diagnosing me with Apnea, and of course wanted me > to get the CPAP and try it out and eventually use it permanantly…I didnt > like the idea, but i said I would humour him for a month if I could stand > it…well I couldnt…the machine caused me to get far less amounts of > good deep rest than I had originally….eventually I had a followup with > him and he discovered I hadnt used the machine as much as I was supposed > to, and he seemed rather disappointed about it, though I explained my > trouble dealing with it to him….So he says "since you dont wanna use the > machine, there really is no solution for your problem, aside from getting > a new job or a new shift"…
What he said is correct… BTW, failure to use CPAP gear if you need it does not result in just obvious effects of sleep-deprivation, but of more important things like heart-enlargement, arrhythmias, clots/strokes, and eventual heart-failure (a disease…). Failure to use it can be caused by not understanding its importance, or from not being fitted well with an appropriate mask for you, or from not knowing how to optimize gear for best comfort and freedom from air-leaks. People here are good with info about this – and see: =================== FAQ for alt.support.sleep-disorder can be found here http://talhost.net/sleep Newsgroup Archives http://talhost.net/sleep/archives.htm this site is a work in progress – feel free to submit info/articles =================== > I feel that given my history (which I explained > to the Dr.) of severe sleep paralysis, vivid lucid dreaming, mild > cataplexy, and the need for my brain to be constantly stimulated to keep > it from "zoning out", the Doc simply WILL NOT even entertain the notion > that I have narcolepsy.
You may have a form of that, too, but this doesn’t preclude OSA, and the need for treatment of that… If you use a drug that forces alertness when you actually need sleep ("good" sleep…), that can cause problems, or hide the real problems… > I just feel like no one understands at all just how frustrating it is.
"Been there…", but with different issues…;-) Good luck – and I would reconsider use of CPAP gear, though it can take a while to "settle in" with it, and there will continue to be "inconveniences" with its use (but it can be necessary, in not very obvious ways, to your future health…). – David Ruether r…@cornell.edu http://www.ferrario.com/ruether
Response:
I have sort of a problem. Ever since I was a young teenager (25 now), I’ve had a sleeping disorder(or more than one). At the time I had no idea what that was. Over the years I realized, after reading up on the subject of sleeping disorders, that this is what my problem was. But what was it that was the problem? My main symptoms were sleep paralysis (on a highly regular and abnormal basis) accompanied by extremely vivid and lucid dreams often, and the tendancy to fall asleep all the sudden many times a day when I felt I wasnt that tired to begin with. Also (later I learned the term) I have always had what I consider to be mild cataplexy, because when I am startled in any way, for a split second all of my muscles feel as though they go limp, almost how I feel when Im having an episode of sleep paralysis. At any rate it never really presented that MUCH of a problem or inconvenience, though it WAS extremely difficult to stay awake through an hour and a half long class in high school, which resulted in very poor grades come graduation time. I barely passed, and it was all because i simply could not tolerate sitting still in one place for an hour and a half and listening to someone drone on and on about some boring subject. The thing is, a couple years ago I took a job in the Information Services department of a local hospital and got stuck on permanent midnight shifts 7pm-7am. It was then that I realized the full scope and severity of my problems, and I almost lost my job due to the fact that every single night I was dozing off probably 10 or 15 times in here. Here’s whats interesting about it; If I’m doing something that is ’stimulating’ my mind, let’s say driving my car (a standard) I NEVER just drop off into sleep suddenly because number one I have to shift gears all the time, and number two I am extremely cautious of everything going on around me as far as other drivers, so my mind has no problem staying alert….however at my job, it involves sitting down with nothing to do for hours on end, and this is where I run into trouble. I can sleep all day long, and feel perfectly rested, yet when I come to work and sit down for very long I will start (what I call) "zoning in and out" of consciousness….I normally have absolutely no idea that im doin this until i come out of it, and its not like regular sleep, its not very deep, like the mode "standby" that a computer goes on when left unattended for a period of time. My mind does this exact thing. Im not particularly sleepy when this is happening. I went to the sleep center, and the first thing that bothered me was that they wanted to do the study at night, which would skew the results in my opinion because I NEVER sleep at night, I work at night and sleep in the day. So they did the one test where I come in and stay all night and sleep till morning, with things hooked up all over me, and the cpap, im sure you are all aware of what its called, I forget now…..at any rate during "calibration" i went out and had to be woken up again…I woke up a few times that I remember during the night as well, but when you are in this situation, its unnatural and an un-normal setting regardless of how bedroom-like they try and make it look, it still isnt the same and still contributes to the results being slightly skewed I would have to say. Anyway, the next day I had to stay for what I believe was the Multiple Sleep Latency Test, and at a later date the doctor informed me that he was diagnosing me with Apnea, and of course wanted me to get the CPAP and try it out and eventually use it permanantly…I didnt like the idea, but i said I would humour him for a month if I could stand it…well I couldnt…the machine caused me to get far less amounts of good deep rest than I had originally….eventually I had a followup with him and he discovered I hadnt used the machine as much as I was supposed to, and he seemed rather disappointed about it, though I explained my trouble dealing with it to him….So he says "since you dont wanna use the machine, there really is no solution for your problem, aside from getting a new job or a new shift"…which is just not possible…so finally he says "i do have this drug, Provigil, and blah blah try it out, insurance may not pay for it(it did magically even though its usually exclusively used for Narcolepsy, and they will only approve it for such, remember I was diagnosed with Apnea)…..well see thats the thing, I always felt that i did have NARCOLEPSY….my doctor simply WILL NOT accept it, of course one could say "well he’s the doctor not you so he knows best" but I dont know if thats entirely true ya know? I will admit that theres a possibility that I have very MILD apnea (my results DID show that I had woken up a few times in an hour or so, which is why he diagnosed me with Apnea) AND the results didnt seem to show that I had narcolepsy, although my argument is, NOT ONLY was the test done at a time I wouldnt normally have been asleep, it WAS only one day of my life and I hardly think my symptoms are there 24/7. I feel that given my history (which I explained to the Dr.) of severe sleep paralysis, vivid lucid dreaming, mild cataplexy, and the need for my brain to be constantly stimulated to keep it from "zoning out", the Doc simply WILL NOT even entertain the notion that I have narcolepsy. Like I said I very well may have mild apnea, I dont dispute it I suppose, but I feel that my REAL problems are caused by either Narcolepsy OR some type of Attention problem (which may be linked to narcolepsy anyway, has yet to be seen studied enough) because as I said, I am not falling asleep because I am overwhelmingly groggy and tired all day, I am falling asleep because my mind becomes bored or "unfocused" when theres nothing to do, and I simply cannot keep myself from "going on standby mode" over and over again…doesnt have much at all to do with being tired, though being tired ON TOP of it makes it that much worse….so anyway I am on Provigil, my insurance is being good to me at this point by covering it and all. I must say, it truly is a miracle drug to me in every way. I’ve never felt more alert and in control of my problem in my WHOLE LIFE…..I take one 200mg pill per day when I get to work at night and it works wonders….although if i dont get AT LEAST 8 hours of sleep during the day, even on the pill, I will still "zone out" if im not careful. So I guess in the end, the Doc put me on a pill FOR narcolepsy, even though he insists its not that, and I insist it IS, so I guess it worked out after all…I just wish I could convince him to listen to me….I have had at least 5 concussions in my lifetime and I feel like this could be tied to my problems…he has nothing to add to that theory other to imply that my ONLY problem is Apnea…I disagree and am afraid at some point in the future I will have trouble with him and more importantly my insurance company over the doctors insistence toward Apnea…..any info anyone has to give would would really help me out a lot, I just feel like no one understands at all just how frustrating it is.
