Question:
I believe you have described non-24-hour sleep-wake syndrome (thanks to the poster who first pointed me towards this)! http://www.sleepdisorderchannel.net/dsps/depression.shtml Short version, I agree doctors generally suck 
but if you can’t be happy in Hawaii you are in BIG trouble . Seriously, the depression from sleep deprivation can be incredible and not relieved by any anti-depressants. The sleep has to be improved even if this means a life altering decision (do you really like that job that much . Mike "Ted Fisher" <tf83029…@nospam.yahoo.com> wrote in message
news:3C6E89E3.91D7F1E8@nospam.yahoo.com… – Hide quoted text — Show quoted text -> BJMagiera wrote: > > Hello > > I suffer from the same thing for number of years. Got through by always taking > > one type of sleeping pill or another, or antidepressant. The problem is I take > > too many of them. Decided to check into what sleep studies do and how they > > work. Pretty new to the computer so have to figure out how this support group > > works. > > Right now I feel pretty hopeless, tired of fighting with this thing that > > controls my life. > > Anyway, have to go for now.Will check my computer later. > > Barbara > First, let me make it clear, as I should have in my original post, that I just > made up the name of the condition that labels this thread. The most precise > diagnosis I’ve received from a Medical Profe$$ional is ‘Boy, you really *don’t* > sleep, do you?’ Which doesn’t make much of a name; ‘My name is Ted, and I am a > don’tsleepatallic.’ > Now I don’t know if this helps, but about feeling helpless; one of the most > difficult of the characteristics of my problem with sleep was thoughts of suicide. > They were, before I finally gave myself over to sleeping on whatever schedule my > body preferred, constant and loud; the worse the sleep, the more I would think of > ending it all. But somehow, I knew that it was just a voice in my head, not really > me. I never gave over to it, and you shouldn’t give over to hopelessness. It > isn’t you. There is always hope, whether at any given time you can see it or not. > For me, a recognition in my early teens of an oddity of human thinking has > helped a great deal. I saw so many people who had happiness on hold; ‘I will be > happy when I get out of (high school, college, this marriage, this house, this job > . . .)’ And I’d see those same people, after high school or college or divorce, > and they would have only advanced to the next stage of happiness-delay; they’d be > ‘happy when I go on vacation, retire, get married,’ whatever. So I purposely > developed a happiness habit; wherever I was, whatever I was doing, I would look > around for those things in life that are interesting and enjoyable, which this > world is well supplied with. > Happiness is being happy. If you can’t be happy slogging through the snow on > the coldest day of the year, you’re not going to be happy in Hawaii. If you can’t > be happy doing what you are doing right now – happy that the sky is so blue, or > filled with such pretty clouds, or raining in such an interesting way; interested > in the amazing things people do for good or ill; then no change in the conditions > of your life are going to make you any happier. > So, realizing this, I have remained endlessly entertained by life, even when > so desperate for sleep that I was trying to knock myself out by banging my head > against a wall. I kid you not! > As to your problem; pursue a solution vigorously, be prepared to *insist* that > doctors pay attention to it (the quasi-solution I have reached would have been > arived at a lot sooner if I hadn’t been so willing for so long to accept the > dismissals of the medical industry) and be prepared for surprises – solutions > exist, but often in unsuspected areas! > Have you ever tried just letting your body decide when to sleep? I know it is > hard to do, but if you have to give up a lot of the things you do in the world, > that’s better than giving up the world. > Hope this helps.
Response:
Ted Fisher <tf83029…@nospam.yahoo.com> wrote: >> Pick up a copy of Dr. Dement’s _The Promise of SLEEP_, there’s more > I think I’ve read it already, but I’ll go look it up to see if I have. >Would it surprise you that I have a terrible memory?
Not at all, it sort of comes with the territory. >> There’s a type of insomnia known as Sleep State Misperception, where >> people sleep without realizing it. I really can’t believe that you’re >> sleeping as little as you think, especially since don’t show symptoms >> of severe sleep deprivation. > It took me two years with the humorously-named Dr. Sack – I kid you not! >- up Pill Hill to convince him that I was indeed not sleeping. That second >somnogram – one 12-minute sleep in 14 hours – finally persuaded him that my >perceptions were accurate.
For that one test. You had arousals during your first test, that meant you were sleeping. > Didn’t help in the long run, though; he had never >seen anyone whose brain wave patterns showed he was ready to sleep but wasn’t >sleeping, so he had no course of action to recommend;
I can only suggest a consultation at Stanford, they’ll figure it out if anyone can. > After that last somnogram it >took more than a month for my sleep periods to settle down, and so when I >should have contested the HMO’s decision, I was very withdrawn and >incommunicative, and had no one to speak up for me. Whatayagonnado?
How long ago was this? My HMO allows two years to contest a decision. > I should have expected what I have gotten for replies. When my sleep >problems got worse again in my thirties and I started reading about it, I >encountered that sleep debt estimate – if you cannot lie down during the day >and fall asleep, you don’t really have a sleep debt
I’m not sure that’s correct, you have to try at different times, like with the Multiple Sleep Latency Test. >- and the idea that >people often underestimate the amount of sleep they get. Took their word for >it. Kept it up for years. The same cycle over and over; get a good job, try >to keep a schedule, sleep goes south, deal with it for 1 1/2 to 2 years, >finally have a breakdown, loose everything, relationships, job, interest, all >ability to interact with anyone, end up living off family – but when not >trying to keep a schedule, after a few months, sleeping when I can, things >get better; so, full again of vigor and health, I get a job, try to keep a >schedule . . .
It looks like your biological clock is set for something other than 24 hours. That’s not unusual. > I remember with horror being in bed, wide awake but physically >exhausted, thinking ‘is this the time I’m actually asleep?’ Being completely >aware of the passage of time with no gaps in my awareness, thinking ten >minutes has gone by since I last looked at the clock, and it has; being aware >of everything happening around me. My ex-wife never saw me asleep once in >six years. None of my lovers ever saw me asleep. I’d ask if I snored; >they’d say as far as they knew, I never slept. I used to live on a street >that had all-night bus service. I’d hear every bus, they’d come by just when >I thought they should.
But if arousals were keeping you from deep sleep, wouldn’t you be more likely to wake up when the bus went by? You’d also be less likely to snore. >> There’s also disorder called UARS (Upper Airway Resistance Syndrome) >> that could explain the arousals during your first sleep study, UARS >> wasn’t recognized at that time. > If I ever get treatment again, I’ll look into this. OHSU had what I was >told was the best equipment there was when I took that last somnogram three >or four years ago, so this would have to be pretty new not to have got their >attention.
I think UARS was identified in 1997, it might have taken some time for word to get around and the sleep labs to get the necessary sensors. My sleep lab had the sensors but wasn’t routinely testing for it 18 months ago, that may have changed. >> Always remember what Mark Twain said about Mahler’s music. <g> > I’ll bite. I remember he said of Wagner that his music wasn’t as bad as >it sounded . . .
Shoot, wrong composer. I think I’ll quit posting until my re-titration. <g> Tom
Response:
Tom Devlin wrote: > Ted Fisher <tf83029…@nospam.yahoo.com> wrote: > > It took me two years with the humorously-named Dr. Sack – I kid you not! > >- up Pill Hill to convince him that I was indeed not sleeping. That second > >somnogram – one 12-minute sleep in 14 hours – finally persuaded him that my > >perceptions were accurate. > For that one test. You had arousals during your first test, that meant > you were sleeping.
True. The curious thing is that my experience was of almost 8 hours of almost uninterupted sleep – that first somnogram was the best night’s sleep I’d had in years! – whereas they measured less than 5 1/2 hours of frequently interrupted sleep, which seems on the face of it to argue that it is more likely that I am awake when I think I’m asleep than the opposite. However, I do hope that my sensitivity to the question of unaware sleeping has not been used by me as an excuse for rudeness. It is undeniably true that many, perhaps most, people who experience sleep problems are actually getting more sleep than they think they are. Again, awareness of this fact, and of how illogical my other characteristics are – as with being less likely to sleep if sleep has been poor the day before – led me to deny for more than a decade that sleep itself was actually the problem, and that once I concluded that I wasn’t sleeping, convincing anyone else of this became the challenge rather than actually getting help. Warning signs all over; the more one is committed to a view, the less likely one is to see error in same. So I try as hard as I can to be open to any and all views, especially when I feel an emotional reaction to them. > > Didn’t help in the long run, though; he had never > >seen anyone whose brain wave patterns showed he was ready to sleep but wasn’t > >sleeping, so he had no course of action to recommend; > I can only suggest a consultation at Stanford, they’ll figure it out > if anyone can.
If only that was an option! As an asside; My father passed away December 2000, and I’ve spent a lot of time since in Silly Francisco getting his affairs ordered and helping my step-mom get ready to move up here. Why she should want to leave a rent-controlled apartment in central SF to move to Stumptown (PDX) is beyond me . . . But I had a great time wandering the countryside, including trips to Palo Alto. What a beautiful little town, and what a beautiful campus! The Old Quad is an architectural masterpiece, and the way it sits in its landscaped surroundings, with drop-dead gorgeous views through ornate carved archways, is almost dreamlike! I commend it to anyone who’s never seen it. > > After that last somnogram it > >took more than a month for my sleep periods to settle down, and so when I > >should have contested the HMO’s decision, I was very withdrawn and > >incommunicative, and had no one to speak up for me. Whatayagonnado? > How long ago was this? My HMO allows two years to contest a decision.
The HMO raised its dues beyond what I could pay on my SSD. But I have the feeling I did not pursue that as far as I should. I really need someone to represent my interest, as the insomnia makes me very muddle headed. > > I should have expected what I have gotten for replies. When my sleep > >problems got worse again in my thirties and I started reading about it, I > >encountered that sleep debt estimate – if you cannot lie down during the day > >and fall asleep, you don’t really have a sleep debt > I’m not sure that’s correct, you have to try at different times, like > with the Multiple Sleep Latency Test.
I cannot sleep outside of the period my screwed-up body rythms impose, no matter how tired I am. Those periods only approach consistancy – seemingly about 25 hours – if sleep the day before was moderately good, and if the intervening awake period has been stress-free and calm, and had at least half an hour of moderate excersize. Fortunately, I love to take walks; so you can imagine the fun I had in SF. At least, once I got my hill legs developed . . . > >- and the idea that > >people often underestimate the amount of sleep they get. Took their word for > >it. Kept it up for years. The same cycle over and over; get a good job, try > >to keep a schedule, sleep goes south, deal with it for 1 1/2 to 2 years, > >finally have a breakdown, loose everything, relationships, job, interest, all > >ability to interact with anyone, end up living off family – but when not > >trying to keep a schedule, after a few months, sleeping when I can, things > >get better; so, full again of vigor and health, I get a job, try to keep a > >schedule . . . > It looks like your biological clock is set for something other than 24 > hours. That’s not unusual.
Logically, the setting of a biological clock to a longer period than one day is absolutely neccessary for the circadian functioning of any biota. Chaos theory proposes thus; if a being’s clock were set to the exact length of a day, as would otherwise seem logical, it would not take very long for the tiny differences in actual day length to start shifting said being’s clock around until that being would be awake when it needs to be asleep. The only way therefore that such biological clocks *could* function would be the mechanism we see; a clock set longer than the longest possible day, and reset daily by mechanisms (most likely controlled by light). I’ve used powerful grow lights, strong light on the backs of my knees, and spent every waking moment I could out in the natural light, with as little or no clothing as possible – not a pretty sight! – for many years. I’ve tried every regimen I’ve ever heard of, every schedule of light exposure I’ve ever read of, and tried them repeatedly – being suspicious of my own perceptions – with absolutely no change. > > I remember with horror being in bed, wide awake but physically > >exhausted, thinking ‘is this the time I’m actually asleep?’ Being completely > >aware of the passage of time with no gaps in my awareness, thinking ten > >minutes has gone by since I last looked at the clock, and it has; being aware > >of everything happening around me. My ex-wife never saw me asleep once in > >six years. None of my lovers ever saw me asleep. I’d ask if I snored; > >they’d say as far as they knew, I never slept. I used to live on a street > >that had all-night bus service. I’d hear every bus, they’d come by just when > >I thought they should. > But if arousals were keeping you from deep sleep, wouldn’t you be more > likely to wake up when the bus went by? You’d also be less likely to > snore.
This was part of my trying to decifer when I was in fact sleeping, before I gave up the idea that I must be sleeping and not aware of it. I was completely aware of the entire night, buses, cars, people walking by, others in the house I was in. Birds singing. No periods of disjointed thoughts. When you are concious for eight complete hours in bed, it’s difficult to imagine where any significant sleep periods could sneak in there! It is, however, certainly a common enough experience to be getting sleep and not be aware of it. This was brought home even more strongly by my experiences with the idea that one should get up after a certain period – both 5 and 20 minutes had been postulated – without falling asleep. This pretty much prevented me from getting any sleep at all; I’d be in bed for the postulated time, and then up for a while, all night long. > Tom
Thanks for the time and the info. Again, I hope I haven’t been too sensitive about all this. I have no problem admitting that my perceptions may be false. On the other hand, the constant two-year cycle of work, poor sleep, collapse and improved sleep is well-documented. The conclusion I am forced to is that my circadian rythms are not being reset, that the resetting mechanism is not functioning. But all conclusions are tentative . . .
Response:
Hello I suffer from the same thing for number of years. Got through by always taking one type of sleeping pill or another, or antidepressant. The problem is I take too many of them. Decided to check into what sleep studies do and how they work. Pretty new to the computer so have to figure out how this support group works. Right now I feel pretty hopeless, tired of fighting with this thing that controls my life. Anyway, have to go for now.Will check my computer later. Barbara
Response:
BJMagiera wrote: > Hello > I suffer from the same thing for number of years. Got through by always taking > one type of sleeping pill or another, or antidepressant. The problem is I take > too many of them. Decided to check into what sleep studies do and how they > work. Pretty new to the computer so have to figure out how this support group > works. > Right now I feel pretty hopeless, tired of fighting with this thing that > controls my life. > Anyway, have to go for now.Will check my computer later. > Barbara
First, let me make it clear, as I should have in my original post, that I just made up the name of the condition that labels this thread. The most precise diagnosis I’ve received from a Medical Profe$$ional is ‘Boy, you really *don’t* sleep, do you?’ Which doesn’t make much of a name; ‘My name is Ted, and I am a don’tsleepatallic.’ Now I don’t know if this helps, but about feeling helpless; one of the most difficult of the characteristics of my problem with sleep was thoughts of suicide. They were, before I finally gave myself over to sleeping on whatever schedule my body preferred, constant and loud; the worse the sleep, the more I would think of ending it all. But somehow, I knew that it was just a voice in my head, not really me. I never gave over to it, and you shouldn’t give over to hopelessness. It isn’t you. There is always hope, whether at any given time you can see it or not. For me, a recognition in my early teens of an oddity of human thinking has helped a great deal. I saw so many people who had happiness on hold; ‘I will be happy when I get out of (high school, college, this marriage, this house, this job . . .)’ And I’d see those same people, after high school or college or divorce, and they would have only advanced to the next stage of happiness-delay; they’d be ‘happy when I go on vacation, retire, get married,’ whatever. So I purposely developed a happiness habit; wherever I was, whatever I was doing, I would look around for those things in life that are interesting and enjoyable, which this world is well supplied with. Happiness is being happy. If you can’t be happy slogging through the snow on the coldest day of the year, you’re not going to be happy in Hawaii. If you can’t be happy doing what you are doing right now – happy that the sky is so blue, or filled with such pretty clouds, or raining in such an interesting way; interested in the amazing things people do for good or ill; then no change in the conditions of your life are going to make you any happier. So, realizing this, I have remained endlessly entertained by life, even when so desperate for sleep that I was trying to knock myself out by banging my head against a wall. I kid you not! As to your problem; pursue a solution vigorously, be prepared to *insist* that doctors pay attention to it (the quasi-solution I have reached would have been arived at a lot sooner if I hadn’t been so willing for so long to accept the dismissals of the medical industry) and be prepared for surprises – solutions exist, but often in unsuspected areas! Have you ever tried just letting your body decide when to sleep? I know it is hard to do, but if you have to give up a lot of the things you do in the world, that’s better than giving up the world. Hope this helps.
Response:
not sure I believe some of this though I am sure you do, just my experience when I was awake long periods using drugs and what I have read about people staying awake without drug but either way they start to hallucinate. There is upper airway syndrome which is minute apneas not caught by regular sleep test unless they put a small hose up your nose and down your throat while you sleep. These episodes are for a few minutes and can interrupt the sleep. Not sure if oxygen levels would drop much. The other thing is alveolar hypoventilation which I have and that you sleep and breath air in and don’t breath out all the co2. My levels are not very high and this test is a extra test not usually given during a regular sleep test. Generally during sleep according to an expert in my area told me that a person changes stages of sleep about 40 to 50 times a night and I read that we go through about 10 episodes of stages of which there is Stages 1, 2, 3, 4 and rem. You did not mention rem and it is important to have a complete copy of your sleep study so you can see what it there. Sometimes things are overlooked like I was and this expert caught part of my problem. I had sleep apnea and was using cpap to treat it and it knocked out my deep sleep and I changed stages several hundred times a night. I got the apnea fixed by serious expensive surgery but still have excessive changes in stages of sleep. About 150 times in 7 1/2 hrs which is 3x normal. Thinking my co2 retention might be the problem but I recently found out I might have early stage of emphysema and did some research and the co2 retention and emphysema might be related but waiting to talk to doctor to see. With sleep it takes time to find solutions if the problem is not a regular sleep disorder and trust this that there is much to learn about sleep and disorders. If you search and have tests done you might discover something. I have had very good doctor see me and misdiagnose me. "Ted Fisher" <tf83029…@nospam.yahoo.com> wrote in message
news:3C655788.9E8B5442@nospam.yahoo.com… – Hide quoted text — Show quoted text -> . . . Well, I had to call it something! Or I could have said > ‘hello.’ > I’ve been reading through this ng a little while, and don’t see yet > any pattern like mine, though I’m sure there must be. > I’m totally disabled with my extreme sleep problem, which started > when I was about 10. 40 years ago now, and how *those* things happen > I’d just like to know. Almost as if tempus did some kind of fugits > thing er other. > My circadian rhythms are variously between 25 and 30 hours a day. > It does me no good to try to sleep outside this rythm. I cannot nap. > No matter how sleepy I am, or how many hours I have been without sleep > (my personal ‘best’; 11 days) I never fall asleep while driving or > sitting or even while trying to sleep outside of my daily window. (If I > remember correctly, Daily Window was with the Nitty Gritty band, but I > was always into classical myself – but I digress.) So taking those > sleepiness tests, I always have a 0 score! > I have tried using light to reset my circadians, and also tried > using Circadas to reset my lights; no good. I have to let myself sleep > when I can, and it’s almost never refreshing sleep and never unbroken. > If I try to keep to any schedule, I get less and less sleep each day > until finally I’m not sleeping at all – not a minute – for four or five > days at a time, and then sleep five or so hours two days. I went > through high school and into college on five to fifteen hours of sleep a > week, gotten on the weekends only. > It was somewhat better in my twenties, though the music sucked – > anybody want to explain disco? – but in my mid-thirties it started to > get very bad again, and I couldn’t hold down a job for more that two > years; I’d get so exhausted I’d become almost catatonic. I had my first > somnogram in ‘86 or so; as I remember, New Age was a vast improvement, > and I’d discovered a person could *actually listen* to Mahler! Yes, > really! > I need to get a copy of that test, as I don’t remember much, except > they found mild RLS and a few apneas but not enough to explain hundreds > of individual sleep episodes, no Stage III or IV sleep, no sleep episode > longer than about 45 seconds, out of what to my experience was a pretty > good night’s sleep. Nurse (never, ever ask a doctor anything! Just > keep nodding your head and saying "Yes, Doctor" so they feel better > about it, then corner the nurse) said it looked like going from stage > one to two itself was waking me up; they only had a few examples of > muscle movements or apneas waking me. She also asked me how often I had > halucinations. That’s the pits; all this vast lack of sleep and no > hallucinations! You’d think I could get some jollies out of it, but I > never seen nuttin that warnt thar, and neither has my twelve-foot orange > frog Mr Biggles. > Had another somnogram done at Pill Hill (Oregon Health Sciences > University – from whose school of nursing my daughter will be graduating > in June; and then I will have my revenge on all those doctors, oh yes . > . .Hahahahaaaaa!) when I slept for 12 minutes out of 14 hours. Not of > much use; one sleep period, in and out of Stages I and II, no triggers > as to why I was going back and forth or why I woke up; no idea why I > wasn’t sleeping the rest of the time, as all my alphas and betas and for > all I know thetas were properly – um – alpha’d and beta’d. Point is, > acording to all the fancy machines and very personally placed probes, I > must say!, and even the machine that goes Ping! I should have been > asleep. Sheesh, I coulda told em that! > I find that I must obey my seemingly unresetable body clock. I > can maintain by doing so, and avoiding any stress, getting enough > excercise and eating healthy junk; and I take 25mg amytriptiline before > bed.. Can’t make appointments or plans, as I never know when I will be > sleeping. As unfun as living that way is, its better than the > alternative, which is . . . > I’d like to hear from anyone who has had this particular > experience; In my teens and then again in my thirties and early > forties, before I essentially gave up on trying to keep any schedule, I > would have episodes of not sleeping at all that became by the fourth or > fifth day hypothermia, though luckily I did not know what was happening > until just before I gave myself over to sleeping when I could and let > everything else go to hell. In fact, discovering what was happening was > why I stopped trying. I was dying. I’d start feeling kind of fuzzy and > detatched from reality, and my outgoing breath felt hot. This happened > a lot in my teen, and when it started happening again I got in the habit > of taking my tempurature. It would get lower and lower, down to around > 92 degrees (I had to find a special thermometer calibrated that low.) > Then in 1992 I read about how extreme sleep deprivation kills by > hypothermia – a person’s cells simply loose their ability to function as > the burning of fuel in the cell declines. Once I read that, and > realized how close to death I must have been more than a hundred times > over the years, I gave up trying. I mean, think of missing the Clinton > years – those cigars! – though I could easily give Rap a bye . . . > Any comments? Not on the cigars, neccessarily. Who, after all, > can shed light on that – and would we want to know if they could! > And I am sorry about that remark about Mahler. We’ll leave the > subject of Bruckner quite alone . . .
Response:
Tom Devlin wrote: > Ted Fisher <tf83029…@nospam.yahoo.com> wrote: > A few thoughts… > Pick up a copy of Dr. Dement’s _The Promise of SLEEP_, there’s more > valuable information in that book than I found in many months on the > internet.
I think I’ve read it already, but I’ll go look it up to see if I have. Would it surprise you that I have a terrible memory? > There’s a type of insomnia known as Sleep State Misperception, where > people sleep without realizing it. I really can’t believe that you’re > sleeping as little as you think, especially since don’t show symptoms > of severe sleep deprivation.
It took me two years with the humorously-named Dr. Sack – I kid you not! – up Pill Hill to convince him that I was indeed not sleeping. That second somnogram – one 12-minute sleep in 14 hours – finally persuaded him that my perceptions were accurate. Didn’t help in the long run, though; he had never seen anyone whose brain wave patterns showed he was ready to sleep but wasn’t sleeping, so he had no course of action to recommend; when the HMO I was in then got this prognosis, they said they wouldn’t pay for anything more in the absence of a clear plan of action with an estimatable success rate. Unfortunately for me, at the time I was sleeping very little. For whatever reason, lack of sleep snowballs on me, so that the more tired I am, the less likely to sleep – just one of the things that kept me from zeroing in on sleep deprivation as the problem, as opposed to thinking of the sleep problems as part of some larger illness, because it’s so illogical to be *less* likely to sleep the less sleep I’ve had. After that last somnogram it took more than a month for my sleep periods to settle down, and so when I should have contested the HMO’s decision, I was very withdrawn and incommunicative, and had no one to speak up for me. Whatayagonnado? I should have expected what I have gotten for replies. When my sleep problems got worse again in my thirties and I started reading about it, I encountered that sleep debt estimate – if you cannot lie down during the day and fall asleep, you don’t really have a sleep debt – and the idea that people often underestimate the amount of sleep they get. Took their word for it. Kept it up for years. The same cycle over and over; get a good job, try to keep a schedule, sleep goes south, deal with it for 1 1/2 to 2 years, finally have a breakdown, loose everything, relationships, job, interest, all ability to interact with anyone, end up living off family – but when not trying to keep a schedule, after a few months, sleeping when I can, things get better; so, full again of vigor and health, I get a job, try to keep a schedule . . . The smartest thing I ever did was to give all that up in the early 90’s. It took years to get to where I am now, sleeping about 5 hours out of 26-30 or more, living (if you can call it that) on a Social Insecurity disability claim (which, of course, I had to go to court for, spending $6000 and three years.) So can I prove any of what I say? Course not. I’ve tried all the approaches I’ve ever heard of; getting out of bed after 20 minutes, getting out of bed after 5 minutes – was awake for 5 days straight on that one, because it takes me about half an hour to fall asleep; diet and exercize regimes. I took some really heavy sleeping medications. Never slept using them, I’d be just as awake but very groggy. Many sleeping pills have an enervating effect on me. But the biggest challenge was simply getting a doctor to take me seriously. They’d have me lie down on the couch in a quiet room and I wouldn’t fall asleep; therefore, no sleep debt. I remember with horror being in bed, wide awake but physically exhausted, thinking ‘is this the time I’m actually asleep?’ Being completely aware of the passage of time with no gaps in my awareness, thinking ten minutes has gone by since I last looked at the clock, and it has; being aware of everything happening around me. My ex-wife never saw me asleep once in six years. None of my lovers ever saw me asleep. I’d ask if I snored; they’d say as far as they knew, I never slept. I used to live on a street that had all-night bus service. I’d hear every bus, they’d come by just when I thought they should. So it’s kind of a touchy subject with me. Two somnograms, and several sessions with the head of the Sleep Disturbance Clinic at a major teaching hospital, and all it did was prove to the doctors that I do have a serious problem despite not being ever able to take naps and despite having remained awake longer than they thought possible and despite not ever seeing hallucinations (unless all this *is* one, always a possibility; but then why not have one involving sex? I mean, if you’re going to all that effort of imagining the computer and all, why not bring in the dancing girls? Manic obsessions should at least be fun!) and not getting any speciallized treatment because my problem doesn’t fit their assumptions. Funny sort of a Catch 22, ain’t it? I educate myself about sleep problems, which leads me to deny them for years as they are so unlike what I’m reading about, and then when I finally have access to specialists, because my problem doesn’t fit what they know, I spend more years trying to convince them, and then when they finally take me seriously, because my problem doesn’t fit what they know, they can’t suggest anything! > There’s also disorder called UARS (Upper Airway Resistance Syndrome) > that could explain the arousals during your first sleep study, UARS > wasn’t recognized at that time. There’s some debate about whether it’s > a real disorder or simply the result of poor instrumentation missing > apneas, but it can certainly fragment sleep. A new sleep study should > confirm it, just make sure that your sleep lab is using pressure > sensors designed to detect UARS. CPAP is the treatment.
If I ever get treatment again, I’ll look into this. OHSU had what I was told was the best equipment there was when I took that last somnogram three or four years ago, so this would have to be pretty new not to have got their attention. > Always remember what Mark Twain said about Mahler’s music. <g>
I’ll bite. I remember he said of Wagner that his music wasn’t as bad as it sounded . . . A Twain quote I wish I remembered well enough to give it verbatim went something like; There are three great blessings given as a birthright to every American: The right to hold any opinion you wish, no matter how disagreeable others might find it; The right to say and write anything you want, no matter how much it offends others; and The great wisdom to never use the other two blessings. And as long as I’m wasting bandwidth with poorly-remembered quotes, here’ my favorite Benjamin Franklin, who, from the very depths of the Age of Reason, wrote; What a wonderful thing it is to be a Reasoning Being. It allows you to think up a good reason to do whatever it is you wanted to do anyway.
Response:
Ted Fisher <tf83029…@nospam.yahoo.com> wrote:
A few thoughts… Pick up a copy of Dr. Dement’s _The Promise of SLEEP_, there’s more valuable information in that book than I found in many months on the internet. There’s a type of insomnia known as Sleep State Misperception, where people sleep without realizing it. I really can’t believe that you’re sleeping as little as you think, especially since don’t show symptoms of severe sleep deprivation. There’s also disorder called UARS (Upper Airway Resistance Syndrome) that could explain the arousals during your first sleep study, UARS wasn’t recognized at that time. There’s some debate about whether it’s a real disorder or simply the result of poor instrumentation missing apneas, but it can certainly fragment sleep. A new sleep study should confirm it, just make sure that your sleep lab is using pressure sensors designed to detect UARS. CPAP is the treatment. Always remember what Mark Twain said about Mahler’s music. <g> Tom – Hide quoted text — Show quoted text -> . . . Well, I had to call it something! Or I could have said >’hello.’ > I’ve been reading through this ng a little while, and don’t see yet >any pattern like mine, though I’m sure there must be. > I’m totally disabled with my extreme sleep problem, which started >when I was about 10. 40 years ago now, and how *those* things happen >I’d just like to know. Almost as if tempus did some kind of fugits >thing er other. > My circadian rhythms are variously between 25 and 30 hours a day. >It does me no good to try to sleep outside this rythm. I cannot nap. >No matter how sleepy I am, or how many hours I have been without sleep >(my personal ‘best’; 11 days) I never fall asleep while driving or >sitting or even while trying to sleep outside of my daily window. (If I >remember correctly, Daily Window was with the Nitty Gritty band, but I >was always into classical myself – but I digress.) So taking those >sleepiness tests, I always have a 0 score! > I have tried using light to reset my circadians, and also tried >using Circadas to reset my lights; no good. I have to let myself sleep >when I can, and it’s almost never refreshing sleep and never unbroken. >If I try to keep to any schedule, I get less and less sleep each day >until finally I’m not sleeping at all – not a minute – for four or five >days at a time, and then sleep five or so hours two days. I went >through high school and into college on five to fifteen hours of sleep a >week, gotten on the weekends only. > It was somewhat better in my twenties, though the music sucked – >anybody want to explain disco? – but in my mid-thirties it started to >get very bad again, and I couldn’t hold down a job for more that two >years; I’d get so exhausted I’d become almost catatonic. I had my first >somnogram in ‘86 or so; as I remember, New Age was a vast improvement, >and I’d discovered a person could *actually listen* to Mahler! Yes, >really! > I need to get a copy of that test, as I don’t remember much, except >they found mild RLS and a few apneas but not enough to explain hundreds >of individual sleep episodes, no Stage III or IV sleep, no sleep episode >longer than about 45 seconds, out of what to my experience was a pretty >good night’s sleep. Nurse (never, ever ask a doctor anything! Just >keep nodding your head and saying "Yes, Doctor" so they feel better >about it, then corner the nurse) said it looked like going from stage >one to two itself was waking me up; they only had a few examples of >muscle movements or apneas waking me. She also asked me how often I had >halucinations. That’s the pits; all this vast lack of sleep and no >hallucinations! You’d think I could get some jollies out of it, but I >never seen nuttin that warnt thar, and neither has my twelve-foot orange >frog Mr Biggles. > Had another somnogram done at Pill Hill (Oregon Health Sciences >University – from whose school of nursing my daughter will be graduating >in June; and then I will have my revenge on all those doctors, oh yes . >. .Hahahahaaaaa!) when I slept for 12 minutes out of 14 hours. Not of >much use; one sleep period, in and out of Stages I and II, no triggers >as to why I was going back and forth or why I woke up; no idea why I >wasn’t sleeping the rest of the time, as all my alphas and betas and for >all I know thetas were properly – um – alpha’d and beta’d. Point is, >acording to all the fancy machines and very personally placed probes, I >must say!, and even the machine that goes Ping! I should have been >asleep. Sheesh, I coulda told em that! > I find that I must obey my seemingly unresetable body clock. I >can maintain by doing so, and avoiding any stress, getting enough >excercise and eating healthy junk; and I take 25mg amytriptiline before >bed.. Can’t make appointments or plans, as I never know when I will be >sleeping. As unfun as living that way is, its better than the >alternative, which is . . . > I’d like to hear from anyone who has had this particular >experience; In my teens and then again in my thirties and early >forties, before I essentially gave up on trying to keep any schedule, I >would have episodes of not sleeping at all that became by the fourth or >fifth day hypothermia, though luckily I did not know what was happening >until just before I gave myself over to sleeping when I could and let >everything else go to hell. In fact, discovering what was happening was >why I stopped trying. I was dying. I’d start feeling kind of fuzzy and >detatched from reality, and my outgoing breath felt hot. This happened >a lot in my teen, and when it started happening again I got in the habit >of taking my tempurature. It would get lower and lower, down to around >92 degrees (I had to find a special thermometer calibrated that low.) >Then in 1992 I read about how extreme sleep deprivation kills by >hypothermia – a person’s cells simply loose their ability to function as >the burning of fuel in the cell declines. Once I read that, and >realized how close to death I must have been more than a hundred times >over the years, I gave up trying. I mean, think of missing the Clinton >years – those cigars! – though I could easily give Rap a bye . . . > Any comments? Not on the cigars, neccessarily. Who, after all, >can shed light on that – and would we want to know if they could! > And I am sorry about that remark about Mahler. We’ll leave the >subject of Bruckner quite alone . . .
Response:
. . . Well, I had to call it something! Or I could have said ‘hello.’ I’ve been reading through this ng a little while, and don’t see yet any pattern like mine, though I’m sure there must be. I’m totally disabled with my extreme sleep problem, which started when I was about 10. 40 years ago now, and how *those* things happen I’d just like to know. Almost as if tempus did some kind of fugits thing er other. My circadian rhythms are variously between 25 and 30 hours a day. It does me no good to try to sleep outside this rythm. I cannot nap. No matter how sleepy I am, or how many hours I have been without sleep (my personal ‘best’; 11 days) I never fall asleep while driving or sitting or even while trying to sleep outside of my daily window. (If I remember correctly, Daily Window was with the Nitty Gritty band, but I was always into classical myself – but I digress.) So taking those sleepiness tests, I always have a 0 score! I have tried using light to reset my circadians, and also tried using Circadas to reset my lights; no good. I have to let myself sleep when I can, and it’s almost never refreshing sleep and never unbroken. If I try to keep to any schedule, I get less and less sleep each day until finally I’m not sleeping at all – not a minute – for four or five days at a time, and then sleep five or so hours two days. I went through high school and into college on five to fifteen hours of sleep a week, gotten on the weekends only. It was somewhat better in my twenties, though the music sucked – anybody want to explain disco? – but in my mid-thirties it started to get very bad again, and I couldn’t hold down a job for more that two years; I’d get so exhausted I’d become almost catatonic. I had my first somnogram in ‘86 or so; as I remember, New Age was a vast improvement, and I’d discovered a person could *actually listen* to Mahler! Yes, really! I need to get a copy of that test, as I don’t remember much, except they found mild RLS and a few apneas but not enough to explain hundreds of individual sleep episodes, no Stage III or IV sleep, no sleep episode longer than about 45 seconds, out of what to my experience was a pretty good night’s sleep. Nurse (never, ever ask a doctor anything! Just keep nodding your head and saying "Yes, Doctor" so they feel better about it, then corner the nurse) said it looked like going from stage one to two itself was waking me up; they only had a few examples of muscle movements or apneas waking me. She also asked me how often I had halucinations. That’s the pits; all this vast lack of sleep and no hallucinations! You’d think I could get some jollies out of it, but I never seen nuttin that warnt thar, and neither has my twelve-foot orange frog Mr Biggles. Had another somnogram done at Pill Hill (Oregon Health Sciences University – from whose school of nursing my daughter will be graduating in June; and then I will have my revenge on all those doctors, oh yes . . .Hahahahaaaaa!) when I slept for 12 minutes out of 14 hours. Not of much use; one sleep period, in and out of Stages I and II, no triggers as to why I was going back and forth or why I woke up; no idea why I wasn’t sleeping the rest of the time, as all my alphas and betas and for all I know thetas were properly – um – alpha’d and beta’d. Point is, acording to all the fancy machines and very personally placed probes, I must say!, and even the machine that goes Ping! I should have been asleep. Sheesh, I coulda told em that! I find that I must obey my seemingly unresetable body clock. I can maintain by doing so, and avoiding any stress, getting enough excercise and eating healthy junk; and I take 25mg amytriptiline before bed.. Can’t make appointments or plans, as I never know when I will be sleeping. As unfun as living that way is, its better than the alternative, which is . . . I’d like to hear from anyone who has had this particular experience; In my teens and then again in my thirties and early forties, before I essentially gave up on trying to keep any schedule, I would have episodes of not sleeping at all that became by the fourth or fifth day hypothermia, though luckily I did not know what was happening until just before I gave myself over to sleeping when I could and let everything else go to hell. In fact, discovering what was happening was why I stopped trying. I was dying. I’d start feeling kind of fuzzy and detatched from reality, and my outgoing breath felt hot. This happened a lot in my teen, and when it started happening again I got in the habit of taking my tempurature. It would get lower and lower, down to around 92 degrees (I had to find a special thermometer calibrated that low.) Then in 1992 I read about how extreme sleep deprivation kills by hypothermia – a person’s cells simply loose their ability to function as the burning of fuel in the cell declines. Once I read that, and realized how close to death I must have been more than a hundred times over the years, I gave up trying. I mean, think of missing the Clinton years – those cigars! – though I could easily give Rap a bye . . . Any comments? Not on the cigars, neccessarily. Who, after all, can shed light on that – and would we want to know if they could! And I am sorry about that remark about Mahler. We’ll leave the subject of Bruckner quite alone . . .
Response:
) about napping. It’s actually very good especially for someone so young. http://www.kstatecollegian.com/stories/101801/opi_powell.shtml Unfortunately, the first link doesn’t work but still very well done. Mike 
