Question:
I appreciate your concern. I don’t think sleep debt is my problem per se, as I am pretty much convinced I have narcolepsy or IH. I’m just so damn frustrated at not being able to do anything but sleep and work. I want to exercise, see my friends, play with my dog, go shopping! Do things that normal people do. It’s been so long and my shrink has been telling me it’s depression. She’s a wonderful therapist, but fatigue and sleepiness alone are probably NOT depression. Most of the time my mood is fine, except lately when I have just been overwhelmed with how much I want to do and how little awake time I have. I do have/have had depression and I think I’m pretty well stabilized and have been for several years. I just want to be awake! MSLT next week, and I’m going to start throwing fits about getting to see the damn doc sooner than two months after the test. Lori&Mike <mpow…@nospamthe-beach.net> wrote:
: LISTEN, both of you get that idea right off the options table. What you might have : to do if you can’t work "normal" hours is say the hell with normal and find a job : where you can sleep your normal sleep cycle. This is what I did after beating : myself up for years, I cold turkey quit a high paying and high powered job in : Washingtonm D.C. because I was getting crazy thoughts just like you both. That’s : the sleep deprivation talking! There are choices (maybe not easy) but a good life : can be had. Might involve moving (I moved to Las Vegas where most of the people : stayed up late like me), leaving loved ones, going back to school for a nighttime : job, etc. : Now get back to trying to get some help, read and research using www.google.com : and if nothing works due some lifestyle changes. Dad Mike 
)
Response:
> Hi Beth, just got the MRI yesterday afternoon so don’t know what it showed. I was > curious if my brainstem was being crowded from Arnold-Chiari malformation causing > my central apnea. Had to fight to get the doctor to even order the MRI. I will > post results if you are still curious. May take a month to get the
results. Mike Heh….cool……was wondering if you were hinting at ACM – definately still interested. do better than post the results……bring your scans home with you and if you have a scanner….scan the images! (I did *grin*) i’ll be curious to look at em and i can even tell ya myself if you have ACM hehe… been doing lots of research… i have an unofficial diagnosis of Chiari 0 (which is a newly defined condition, most common is Chiari 1 ) to scan the MRIs you will need to hold a lightsource above them as you scan…so have the scanner lid full open and use a lamp or something, might take some experimenting to get the right effect. — Beth in Australia =================== FAQ for alt.support.sleep-disorder can be found here http://www.anchorweb.com.au/sleepdisorders this site is a work in progress – feel free to submit info/articles
Response:
"Tal" <beth…@hotmail.com> wrote in message
news:avn6ab$h2o07$1@ID-148111.news.dfncis.de… – Hide quoted text — Show quoted text -> > Hi Beth, just got the MRI yesterday afternoon so don’t know what it > showed. I was > > curious if my brainstem was being crowded from Arnold-Chiari malformation > causing > > my central apnea. Had to fight to get the doctor to even order the MRI. I > will > > post results if you are still curious. May take a month to get the > results. Mike > Heh….cool……was wondering if you were hinting at ACM – definately still > interested. > do better than post the results……bring your scans home with you and if > you have a scanner….scan the images! (I did *grin*) i’ll be curious to > look at em and i can even tell ya myself if you have ACM hehe… been doing > lots of research… i have an unofficial diagnosis of Chiari 0 (which is a > newly defined condition, most common is Chiari 1 ) > to scan the MRIs you will need to hold a lightsource above them as you > scan…so have the scanner lid full open and use a lamp or something, might > take some experimenting to get the right effect. > — > Beth in Australia > =================== > FAQ for alt.support.sleep-disorder can be found here > http://www.anchorweb.com.au/sleepdisorders > this site is a work in progress – feel free to submit info/articles
You are a women of many talents ) I never would have thought of that! I’ll get a copy and see if I can scan those puppies. So, what do they do about Chiari 0 ? And I forget do you have any central apnea or significant amount of mixed? Thanks again for the great idea ) Mike — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.443 / Virus Database: 248 – Release Date: 1/10/2003
Response:
You are welcome and it came from the heart. Also, I’ve been there myself. So depressed that it seems like it will never end. Man, narcolepsy would be a real pain. Emotions apparently bring on episodes so no laughing crying, yuck! Get on those doctors and office staff ) Hope you feel better (hope we all feel better ) Mike "Amanda J. Howes" <aho…@elk.uvm.edu.invalid> wrote in message news:avn4v7$otgl$1@swen.emba.uvm.edu… – Hide quoted text — Show quoted text -> I appreciate your concern. I don’t think sleep debt is my problem per se, > as I am pretty much convinced I have narcolepsy or IH. I’m just so damn > frustrated at not being able to do anything but sleep and work. I want to > exercise, see my friends, play with my dog, go shopping! Do things that > normal people do. It’s been so long and my shrink has been telling me it’s > depression. She’s a wonderful therapist, but fatigue and sleepiness alone > are probably NOT depression. Most of the time my mood is fine, except > lately when I have just been overwhelmed with how much I want to do and > how little awake time I have. > I do have/have had depression and I think I’m pretty well stabilized and > have been for several years. I just want to be awake! > MSLT next week, and I’m going to start throwing fits about getting to see > the damn doc sooner than two months after the test. > Lori&Mike <mpow…@nospamthe-beach.net> wrote: > : LISTEN, both of you get that idea right off the options table. What you > might have : to do if you can’t work "normal" hours is say the hell with > normal and find a job : where you can sleep your normal sleep cycle. This > is what I did after beating : myself up for years, I cold turkey quit a > high paying and high powered job in : Washingtonm D.C. because I was > getting crazy thoughts just like you both. That’s : the sleep deprivation > talking! There are choices (maybe not easy) but a good life : can be had. > Might involve moving (I moved to Las Vegas where most of the people : > stayed up late like me), leaving loved ones, going back to school for a > nighttime : job, etc. : Now get back to trying to get some help, read and > research using www.google.com : and if nothing works due some lifestyle > changes. Dad Mike )
— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.443 / Virus Database: 248 – Release Date: 1/10/2003
Response:
"Dom Runner" <domrun…@comcast.net> wrote in message
news:1xGdnW2QaKDz5IOjXTWcpg@comcast.com… > NormC <no…@socal.nospam.com> wrote in message > news:3E1D16E4.D919F336@socal.nospam.com… > > It would be in your best interest to post the results (written) of all > your sleep > > tests. Many readers here have posted their results and after hearing what > we had to > > say, went back their doc and said, "What the, hey?" > The paper I got from the sleep doctor basically said that my body clock is > set the opposite from most people. My body wants to fall asleep around 4am > and get up around 12pm. He said that changing this natural pattern was > difficult and rarely effective. Are there more technical results I should > obtain from him, with the actual readings from the sleep study?
Well, 2 points for the doc, he is correct about the difficulty of changing your "normal" sleep clock! Think if someone who goes to sleep at 11 PM every night was told from now on go to sleep at 7 PM and get up eight hours later for work. If you do get the sleep study results and I ALWAYS do, try http://www.suite101.com/article.cfm/sleep_apnea/57133 Lots of reading but will would try to help you with any questions. > > Yes, I suspect you live where most of us live and probably use the same > doctor. Is > > his name Useless….. Dr. Useless? > > Is he a certified sleep doc or just one who found it to be an interesting > and money > > making field? > He is certified and I was referred by my family doctor…who also happens to > be named Useless. Actually it seems many of the doctors around here come > from the Useless family.
Wow, I can’t believe you weren’t told about bright light therapy! This is the top banana and best working procedure for resetting sleep clocks. Did Dr. Useless at least suggest you get out of bed a little earlier and go outside and get some sunlight? Sunlight is natures coffee and tells the body to wake up. When done right can be a powerful help in resetting the circadian (sleep clock) cycle. If doc didn’t mention this, 5 points deducted (major mess-up on his part). > > IMHO, your certified sleep doc should be nothing less than a neurologist. > I have this shaking disorder since I was born and when I was very young had > a grand mal seizure. I’ve been seen by several neurologists who just patted > me on the shoulder and said I have essential tremor (similar to saying one > has idiopathic insomnia) and that it’s not worth treating and not related to > anything deeper. This diagnosis was always based on my touching my finger > to my nose a few times and standing still with my eyes closed. I love to > find a sleep doc who’s also a neurologist…and who actually cares even a > little.
Hey, you had the doc I had last week who hit me with a flubber (old movie ) hammer and pronounced me okay. Had to fight for an Brain MRI. The brain stem plays an important part in sleep regulation. Just to be sure, get a doc to order a Brain MRI. – Hide quoted text — Show quoted text -> > In the treatment of obstructional sleep appnea, it’s my general conclusion > that > > recalling dreams is not good. It means you are not fully asleep, since it > is my > > understanding that most dream recollection comes about if you awaken > during a dream. > > I’m hoping others will confirm this. > Interesting. I don’t always remember my dreams but I do fairly often and > always vividly….I can describe dreams that take me twenty minutes or more > to explain > > You might want to try to find a diplomated > neuropsychiatrist/psychopharmacologist to > > make a final determination of the state of your mind. Who, may I ask, > prescribed the > > Prozac for you? Dr. Useless? > My family doctor prescribed the Prozac as a solution to the constant > fatigue. At that point I was quite willing to try anything, even though I’m > normally suspicious of such drugs, especially since I don’t believe I suffer > from any mental imbalances. I was blown away by the side effects of it, > even though I was taking such a small amount. I don’t think such drugs are > an option for me, even if they are effective for fatigue disorders. Even my > coworkers immediately knew something was very wrong with the way I was > acting on it.
I was put on Prozac for a few weeks (was fun watching the carpet fibers moving in waves:o). Wife yanked me off the stuff, thank God for her! > > There should be a number of additional responses to your posts, includng > other > > authors! Hang in here and be sure the read the responses. > Thanks so much for replying! > Dom
As Norm mentioned, hang in there and read and question. We won’t leave you or any circadian challenged person out to dry. We ain’t doctors ) — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.441 / Virus Database: 247 – Release Date: 1/9/2003
Response:
- Hide quoted text — Show quoted text -"Patrick Richards" <patrickricha…@nospamattbi.com> wrote in message <news:BqiT9.623277$WL3.193127@rwcrnsc54>… > Maybe your doctor should have done a nap test to check for narcolepsy. The > test is given during the day and the person is given 4 or 5 naps tests, say > at 9am you have 20 minutes to fall asleep and then they wake you up and > repeat this at 11, 1, 3, and 5. If you fall asleep quick and go into rem, > especially the rem, this says more likely narcolepsy. > You should also look at when you worked days or had days school or whatever > and see if regular hours might work. The nap test can be given without a > sleep test but that is rare but I would push for it. > "Dom Runner" <domrun…@comcast.net> wrote in message > news:V9mcnTkaaoJMjYCjXTWcqg@comcast.com… > > Just a newbie here desperately seeking help. I’m a 22 year old male in > > general good help and suffer from late onset of sleep (according to my > sleep > > doctor). Basically, I’m just tired all the time. I can sleep twelve > hours > > or more at a stretch. It often takes me several hours to fall asleep, > > though once I actually fall asleep I don’t tend to wake up. I NEVER feel > > fully rested, no matter how much or how little I sleep. I think about > sleep > > all the time…my number one desire most of the time is to sleep. I work > > full time and on my days off I usually just sleep all day instead of going > > out. > > My general schedule goes like so… > > Wake up at 1:20pm > > Work from 2:30pm-11:00pm > > Go to Bed 2:00amish > > Lather, Rinse, Repeat > > I’ve had a sleep study done. Nothing significant was shown. I don’t have > > sleep apnea, I don’t have narcolepsy. My sleep doctor basically told me > > that this is just the way I am and I just have to get used to it. You can > > understand that this was not the most encouraging thing I’ve ever heard. > I > > feel like my life is slipping away without really living it. I’ve tried > > sleeping pills to get to bed earlier…they don’t really work for me at > all. > > Oddly, if I lay down during the day I tend to fall asleep more quickly > than > > when I try to sleep at night, but even than I tend to sleep for very long > > periods of time. I’ve tired forcing myself to get up early to "reset" my > > biological clock but I feel so tired I always end up back in bed until I > > have to go to work. > > Other factors that might be important…I do have a minor tremor disorder > > that makes my hands shake. I’ve suffered from sleep paralysis in the > past, > > though this rarely happens now. I tend to be a lucid dreamer…I usually > > have very clear, detailed dreams and usually know I’m dreaming. It was > > thought I might have a slight seretoin level imbalance and I was put on a > > very low dose of Prozac (10mg). The Prozac had the effect of making my > > brain go absolutely haywire and I had to stop it after only a few days (it > > was amazing…like static over my thoughts). I don’t suffer from > depression > > or any other related problems. > > Was my sleep doctor right? Am I doomed to a life lived like a zombie, > > refusing to go out with friends because the call of my bed is too strong? > I > > can remember feeling like this since I hit puberty, really…though even > as > > a child I can remember still being in bed at 10am when my friends came > over > > and getting yelled at for it. I have plans for my life…I want to write > a > > book and be a published author but everything seems out of reach when I > > can’t imagine staying awake long enough. ANY thoughts would be helpful. > > Dom
You said Any Thoughts, so here goes. I basically have the same problem, but it started late in life for me………All of the people that I know, via the computer, that have this problem, have some type of sinus or breathing problem. Sometimes not very noticeable. I can’t get out of bed in the morning. If I do make it out I get a glass of liquid for breakfast…..easiest thing to fix. Drink makes me cold, so I crawl back under the covers and quite ofter go back to sleep. A couple of months ago I knocked off almost 24 hours and had no idea what time it was when I woke up…..went from about 10 or 11 at night until 7:30 the next night. My head always feels like it’s filled with cotton, and I don’t want to do Anything!!! I got really sick one day and by night was a disaster. Family did a 911 and I wound up in the hospital. They did all the initial tests and their medications knocked me for a loop. I woke up in the morning with oxygen being pumped in. Don’t remember anything that happened during the night, don’t remember any vital signs or blood tests. My roommate told me that part of the night was spent with a hospital dr., one of my drs, and 2 RNs by my side. Spent 5 days in the hospital. The hospital dr. came by once and told me that I needed oxygen. I was too gooped up to ask him why. When I got home I fell into my bed and slept until it was dark. The next day woke up, managed to get out of bed, and realized that something had changed. Everything felt different. My brain felt like it used to before all this sleep mess happened. Felt great for 5 days, by which time I came to the conclusion that it must have been the oxygen that made the difference. It was the only thing that I had that was different…..no antibiotics, etc. On the 6th day everything was back to square one. Didn’t want to get out of bed; head felt like cotton. Thought it would be a breeze to get some help. Went to my internist and told him that the oxygen in the hospital seemed to help me feel good, good, GOOD! He smiled pleasantly and that was that. I phoned a physician referral service and they told me that the only way that I could get oxygen was to go a pulmonary specialist. My son-in-law goes to two of them and gets no help. Oh yes, should have said……….I now feel like I can’t breathe…..nose is stopped up. Son-in-law says "I feel like I’m not getting enough air". Well, this isn’t much, but it’s a thought. Please let me know if you come up with any ideas. I’d like to crawl out of bed sometimes, too. M.R.
Response:
- Hide quoted text — Show quoted text -Tal wrote: > > Hi Beth, just got the MRI yesterday afternoon so don’t know what it > showed. I was > > curious if my brainstem was being crowded from Arnold-Chiari malformation > causing > > my central apnea. Had to fight to get the doctor to even order the MRI. I > will > > post results if you are still curious. May take a month to get the > results. Mike > Heh….cool……was wondering if you were hinting at ACM – definately still > interested. > do better than post the results……bring your scans home with you and if > you have a scanner….scan the images! (I did *grin*) i’ll be curious to > look at em and i can even tell ya myself if you have ACM hehe… been doing > lots of research… i have an unofficial diagnosis of Chiari 0 (which is a > newly defined condition, most common is Chiari 1 ) > to scan the MRIs you will need to hold a lightsource above them as you > scan…so have the scanner lid full open and use a lamp or something, might > take some experimenting to get the right effect.
Any chance of putting them on the website, with Mike’s permission, of course.
Response:
> Hey, you had the doc I had last week who hit me with a flubber (old movie ) > hammer and pronounced me okay. Had to fight for an Brain MRI. The brain stem plays > an important part in sleep regulation. Just to be sure, get a doc to order a Brain > MRI.
Just curious….what did your MRI show? — Beth in Australia =================== FAQ for alt.support.sleep-disorder can be found here http://www.anchorweb.com.au/sleepdisorders this site is a work in progress – feel free to submit info/articles
Response:
"Tal" <beth…@hotmail.com> wrote in message
news:avmi1l$ggqao$1@ID-148111.news.dfncis.de… – Hide quoted text — Show quoted text -> > Hey, you had the doc I had last week who hit me with a flubber (old movie > ) > > hammer and pronounced me okay. Had to fight for an Brain MRI. The brain > stem plays > > an important part in sleep regulation. Just to be sure, get a doc to order > a Brain > > MRI. > Just curious….what did your MRI show? > — > Beth in Australia > =================== > FAQ for alt.support.sleep-disorder can be found here > http://www.anchorweb.com.au/sleepdisorders > this site is a work in progress – feel free to submit info/articles
Hi Beth, just got the MRI yesterday afternoon so don’t know what it showed. I was curious if my brainstem was being crowded from Arnold-Chiari malformation causing my central apnea. Had to fight to get the doctor to even order the MRI. I will post results if you are still curious. May take a month to get the results. Mike — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.441 / Virus Database: 247 – Release Date: 1/9/2003
Response:
"Dom Runner" <domrun…@comcast.net> wrote in message
news:xy-dnQWPhKbo4YOjXTWcqg@comcast.com… – Hide quoted text — Show quoted text -> Amanda J. Howes <aho…@elk.uvm.edu.invalid> wrote in message > news:avkf5j$nrqn$2@swen.emba.uvm.edu… > > I had a PSG with no results and have an MSLT next week. I’m praying it > > shows something. My doc thinks it’s narcolepsy from my history and I hope > > he’s right. I can think of nothing worse than being condemned to a life > > like this with no possibility of any treatment or improvement. I am not > > saying this to scare anyone, but if nothing can be done I have considered > > suicide. It is that bad. > Wow. I didn’t want to bring that up when first introducing myself to the > newsgroup, but I’ve had similar thoughts. When I slept all the time and > didn’t work it seemed alright, since I could still do things in the few > useful hours I had. But now that I work full time it seems I can’t do > anything for myself. I don’t write, I don’t go out, I didn’t even go see > LOTR because giving up three hours of sleeping time was just unfathomable. > What is the point of living like that? Especially when people don’t > understand that I’m serious about this problem…I’m not just being lazy, > which I’m often accused of. My mother could never understand why I dreaded > work so much and just wouldn’t listen that it wasn’t because I hated working > or didn’t want to be independent but simply that I knew working would take > away those few wonderful hours when I wasn’t sleeping out of my control.
LISTEN, both of you get that idea right off the options table. What you might have to do if you can’t work "normal" hours is say the hell with normal and find a job where you can sleep your normal sleep cycle. This is what I did after beating myself up for years, I cold turkey quit a high paying and high powered job in Washingtonm D.C. because I was getting crazy thoughts just like you both. That’s the sleep deprivation talking! There are choices (maybe not easy) but a good life can be had. Might involve moving (I moved to Las Vegas where most of the people stayed up late like me), leaving loved ones, going back to school for a nighttime job, etc. Now get back to trying to get some help, read and research using www.google.com and if nothing works due some lifestyle changes. Dad Mike ) > > There is a sophisticated medical term for your sleep doctor: full of shit. > > Have you had an MSLT? If not, narcolepsy and idiopathic hypersomnia are > > still possibilities. If you have had an MSLT and it showed nothing, he > > needs to keeep looking. It is not normal for people, especially healthy > > people in their 20s, to feel like this. I feel like a truck hit me most > > days. That’s the best way to describe the sheer exhaustion and the > > headache and nausea that accompanies it. > Well, I definitely know I’m going to ignore my old doctor’s non advice and > see about getting a second opinion. I’m so relived to know that most people > agree that disorders like this CAN be helped!
— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.441 / Virus Database: 247 – Release Date: 1/9/2003
Response:
"Dom Runner" <domrun…@comcast.net> wrote in message
news:EcucnVfy8oOC64OjXTWcrg@comcast.com… – Hide quoted text — Show quoted text -> Lori&Mike <mpow…@nospamthe-beach.net> wrote in message > news:v1qkn5ovq4cl59@corp.supernews.com… > > Thank your lucky stars no apnea. Apnea and insomnia are killers. > > At first you sound like a classic Delayed Sleep Phase Syndrome (DSPS) > person to me > > but the never feeling rested throws me. Are you able to sleep when you > want to > > (like on a weekend) and you still feel no better? Could be you built up > such a > > sleep deprivation amount (sleep debt) that it would take weeks of sleeping > when > > your body (not social demands/work) tells you to. > I do believe part of my problem is a major case of sleep debt. It’s almost > as though the amount of sleep I get is actually not a factor in how I feel. > When I was in college there were days I would get only three or four hours > of sleep. I’d feel just as crappy as those days in which I got twelve or > thirteen. The desire to sleep was always present, even if I had received a > larger than average amount. For instance, on a weekend now I might go to > bed around 2am, get up at 1pm to eat and end up back in bed from 3pm to 7pm > and never feel rested the entire time. I’ve never had good sleep habits, so > if this is a case of sleep dept combined with Delayed Sleep Phase, is there > any hope? The option of simply sleeping off that debt of course does not > exist with needing to work. I’d be happy if I could get by on nine hours > and actually feel good when I woke up.
Sure sounds like at least a part is DSPS. > Thank you so much for all the links…seems like I have much reading to do. > It seriously just hit me out of the blue yesterday that there might be > sources of information on sleep problems…I’d just never considered it > before.
I gave you lots to read and pretty much is all the arsenal for trying to reset your sleep clock that exists right now. Also, if you can please read http://www.helioshealth.com/sleep/sleep_01.html very important for DSPS’pers to understand the circadian process. > > Now to the sleep clock adjusters. One is called CHRONOTHERAPY. You stay > > awake a few hours longer each day until you roll your sleep clock forward > to where > > you’d like it. > This sounds interesting and seems like it works but I don’t see how > practical it could be. How many people can really afford to take off a week > from work to roll their clock forward? Any treatment I try will have to > factor in my work schedule
You caught the problem! Cronotheraphy works very well but due to the strange sleep hours you would need at least four days off for daysleeping. You could propably still work for several of the days at the very begginning and end of the 7 day process. And without reinforcing your new sleep and wake time with bright light therapy your sleep clock would slowly go back to what is "normal" for you. > I think my other problem in this will be that I’m not a very good self > motivator…sticking to things is difficult for me. Thanks again for the > info and links! > Sethran
That’s a problem since it is really tough to reset your sleep clock. Good luck. Mike — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.441 / Virus Database: 247 – Release Date: 1/9/2003
Response:
Patrick Richards <patrickricha…@nospamattbi.com> wrote in message
news:BqiT9.623277$WL3.193127@rwcrnsc54… > Maybe your doctor should have done a nap test to check for narcolepsy. The > test is given during the day and the person is given 4 or 5 naps tests, say > at 9am you have 20 minutes to fall asleep and then they wake you up and > repeat this at 11, 1, 3, and 5. If you fall asleep quick and go into rem, > especially the rem, this says more likely narcolepsy.
I actually did have a nap test. I assumed that was standard with the overnight study or else I would have mentioned it. The first two naps I didn’t fall asleep and I didn’t enter REM on the third. On the fourth I did enter REM. However, I have to point out that I was very uncomfortable during the sleep study and I’m not sure how much it might have changed the results. The room was very hot for me with my preference to sleep in the cold. > You should also look at when you worked days or had days school or whatever > and see if regular hours might work. The nap test can be given without a > sleep test but that is rare but I would push for it.
The last time I had really regular hours was when I was in high school and I would always want to sleep after classes, so I know this isn’t just from holding evening work hours, though I’m sure they don’t help at all! Dom
Response:
> I’ve actually been tested many times for thyroid and hormone problems. In > fact, that’s about all my regular doctor ever does. Her solution to > everything is to do a basic blood test, than ignore me when the results > don’t show anything. So I know I’m clean on most basic metabolic and > hormone disorders, including things like lupus and mono.
ok – that’s good, just thought that the high temp could be an indication of a thyroid prob. i’m sorry it hasn’t provided any answers for you though. — Beth in Australia =================== FAQ for alt.support.sleep-disorder can be found here http://www.anchorweb.com.au/sleepdisorders this site is a work in progress – feel free to submit info/articles
Response:
Amanda J. Howes <aho…@elk.uvm.edu.invalid> wrote in message news:avkf5j$nrqn$2@swen.emba.uvm.edu… > I had a PSG with no results and have an MSLT next week. I’m praying it > shows something. My doc thinks it’s narcolepsy from my history and I hope > he’s right. I can think of nothing worse than being condemned to a life > like this with no possibility of any treatment or improvement. I am not > saying this to scare anyone, but if nothing can be done I have considered > suicide. It is that bad.
Wow. I didn’t want to bring that up when first introducing myself to the newsgroup, but I’ve had similar thoughts. When I slept all the time and didn’t work it seemed alright, since I could still do things in the few useful hours I had. But now that I work full time it seems I can’t do anything for myself. I don’t write, I don’t go out, I didn’t even go see LOTR because giving up three hours of sleeping time was just unfathomable. What is the point of living like that? Especially when people don’t understand that I’m serious about this problem…I’m not just being lazy, which I’m often accused of. My mother could never understand why I dreaded work so much and just wouldn’t listen that it wasn’t because I hated working or didn’t want to be independent but simply that I knew working would take away those few wonderful hours when I wasn’t sleeping out of my control. > There is a sophisticated medical term for your sleep doctor: full of shit. > Have you had an MSLT? If not, narcolepsy and idiopathic hypersomnia are > still possibilities. If you have had an MSLT and it showed nothing, he > needs to keeep looking. It is not normal for people, especially healthy > people in their 20s, to feel like this. I feel like a truck hit me most > days. That’s the best way to describe the sheer exhaustion and the > headache and nausea that accompanies it.
Well, I definitely know I’m going to ignore my old doctor’s non advice and see about getting a second opinion. I’m so relived to know that most people agree that disorders like this CAN be helped!
Response:
you should proably get some tests done (if you haven’t already) to check for things like thyroid problems. — Beth in Australia =================== FAQ for alt.support.sleep-disorder can be found here http://www.anchorweb.com.au/sleepdisorders this site is a work in progress – feel free to submit info/articles "Dom Runner" <domrun…@comcast.net> wrote in message
news:7nudnTBRcuvK3YCjXTWcoQ@comcast.com… – Hide quoted text — Show quoted text -> Following up my own post, but one thing I forgot to include… > I seem to have an issue with my body temperature sky rocketing during the > night. I’ve never actually taken my own temperature during this time and > I’m not sure if it is really my actual temperature rising or just that my > idea of temperature changes. During the day I get easily cold and like > thick clothes and jackets. Right now it’s the middle of winter and very > bitter out and I have to sleep with the window wide open, the heat off, and > a fan on high. Anything less and I feel so HOT I just can’t sleep. When I > wake up in the morning I can barely stand to get out of bed because the room > now feels freezing. This personally baffles me. The sleep doctor had no > suggests for it or idea of the case and actually didn’t seem very > interested. I don’t know if it’s related or significant or if I’m just > being odd. > Dom
Response:
Maybe your doctor should have done a nap test to check for narcolepsy. The test is given during the day and the person is given 4 or 5 naps tests, say at 9am you have 20 minutes to fall asleep and then they wake you up and repeat this at 11, 1, 3, and 5. If you fall asleep quick and go into rem, especially the rem, this says more likely narcolepsy. You should also look at when you worked days or had days school or whatever and see if regular hours might work. The nap test can be given without a sleep test but that is rare but I would push for it. "Dom Runner" <domrun…@comcast.net> wrote in message
news:V9mcnTkaaoJMjYCjXTWcqg@comcast.com… – Hide quoted text — Show quoted text -> Just a newbie here desperately seeking help. I’m a 22 year old male in > general good help and suffer from late onset of sleep (according to my sleep > doctor). Basically, I’m just tired all the time. I can sleep twelve hours > or more at a stretch. It often takes me several hours to fall asleep, > though once I actually fall asleep I don’t tend to wake up. I NEVER feel > fully rested, no matter how much or how little I sleep. I think about sleep > all the time…my number one desire most of the time is to sleep. I work > full time and on my days off I usually just sleep all day instead of going > out. > My general schedule goes like so… > Wake up at 1:20pm > Work from 2:30pm-11:00pm > Go to Bed 2:00amish > Lather, Rinse, Repeat > I’ve had a sleep study done. Nothing significant was shown. I don’t have > sleep apnea, I don’t have narcolepsy. My sleep doctor basically told me > that this is just the way I am and I just have to get used to it. You can > understand that this was not the most encouraging thing I’ve ever heard. I > feel like my life is slipping away without really living it. I’ve tried > sleeping pills to get to bed earlier…they don’t really work for me at all. > Oddly, if I lay down during the day I tend to fall asleep more quickly than > when I try to sleep at night, but even than I tend to sleep for very long > periods of time. I’ve tired forcing myself to get up early to "reset" my > biological clock but I feel so tired I always end up back in bed until I > have to go to work. > Other factors that might be important…I do have a minor tremor disorder > that makes my hands shake. I’ve suffered from sleep paralysis in the past, > though this rarely happens now. I tend to be a lucid dreamer…I usually > have very clear, detailed dreams and usually know I’m dreaming. It was > thought I might have a slight seretoin level imbalance and I was put on a > very low dose of Prozac (10mg). The Prozac had the effect of making my > brain go absolutely haywire and I had to stop it after only a few days (it > was amazing…like static over my thoughts). I don’t suffer from depression > or any other related problems. > Was my sleep doctor right? Am I doomed to a life lived like a zombie, > refusing to go out with friends because the call of my bed is too strong? I > can remember feeling like this since I hit puberty, really…though even as > a child I can remember still being in bed at 10am when my friends came over > and getting yelled at for it. I have plans for my life…I want to write a > book and be a published author but everything seems out of reach when I > can’t imagine staying awake long enough. ANY thoughts would be helpful. > Dom
Response:
Patrick Richards <patrickricha…@nospamattbi.com> wrote:
: You should also look at when you worked days or had days school or whatever : and see if regular hours might work. The nap test can be given without a : sleep test but that is rare but I would push for it. My understanding is that this isn’t done because without the overnight sleep study, the MSLT is useless. They need to know that you got adequate sleep the night before. A non-sleep-disordered person will show rapid onset of sleep and possibly REM if sleep deprived. To the original poster – you sound so much like me it’s scary. I’m 25, work an evening shift, and sleep nearly all the hours I’m not at work. It’s wreaking havoc on my social life and my relationship with my boyfriend. Never mind issues like getting adequate exercise to feel okay. I had a PSG with no results and have an MSLT next week. I’m praying it shows something. My doc thinks it’s narcolepsy from my history and I hope he’s right. I can think of nothing worse than being condemned to a life like this with no possibility of any treatment or improvement. I am not saying this to scare anyone, but if nothing can be done I have considered suicide. It is that bad. There is a sophisticated medical term for your sleep doctor: full of shit. Have you had an MSLT? If not, narcolepsy and idiopathic hypersomnia are still possibilities. If you have had an MSLT and it showed nothing, he needs to keeep looking. It is not normal for people, especially healthy people in their 20s, to feel like this. I feel like a truck hit me most days. That’s the best way to describe the sheer exhaustion and the headache and nausea that accompanies it.
Response:
NormC <no…@socal.nospam.com> wrote in message
news:3E1D16E4.D919F336@socal.nospam.com… > It would be in your best interest to post the results (written) of all your sleep > tests. Many readers here have posted their results and after hearing what we had to > say, went back their doc and said, "What the, hey?"
The paper I got from the sleep doctor basically said that my body clock is set the opposite from most people. My body wants to fall asleep around 4am and get up around 12pm. He said that changing this natural pattern was difficult and rarely effective. Are there more technical results I should obtain from him, with the actual readings from the sleep study? > Yes, I suspect you live where most of us live and probably use the same doctor. Is > his name Useless….. Dr. Useless? > Is he a certified sleep doc or just one who found it to be an interesting and money > making field?
He is certified and I was referred by my family doctor…who also happens to be named Useless. Actually it seems many of the doctors around here come from the Useless family. > IMHO, your certified sleep doc should be nothing less than a neurologist.
I have this shaking disorder since I was born and when I was very young had a grand mal seizure. I’ve been seen by several neurologists who just patted me on the shoulder and said I have essential tremor (similar to saying one has idiopathic insomnia) and that it’s not worth treating and not related to anything deeper. This diagnosis was always based on my touching my finger to my nose a few times and standing still with my eyes closed. I love to find a sleep doc who’s also a neurologist…and who actually cares even a little. > In the treatment of obstructional sleep appnea, it’s my general conclusion that > recalling dreams is not good. It means you are not fully asleep, since it is my > understanding that most dream recollection comes about if you awaken during a dream. > I’m hoping others will confirm this.
Interesting. I don’t always remember my dreams but I do fairly often and always vividly….I can describe dreams that take me twenty minutes or more to explain > You might want to try to find a diplomated
neuropsychiatrist/psychopharmacologist to > make a final determination of the state of your mind. Who, may I ask, prescribed the > Prozac for you? Dr. Useless?
My family doctor prescribed the Prozac as a solution to the constant fatigue. At that point I was quite willing to try anything, even though I’m normally suspicious of such drugs, especially since I don’t believe I suffer from any mental imbalances. I was blown away by the side effects of it, even though I was taking such a small amount. I don’t think such drugs are an option for me, even if they are effective for fatigue disorders. Even my coworkers immediately knew something was very wrong with the way I was acting on it. > There should be a number of additional responses to your posts, includng other > authors! Hang in here and be sure the read the responses.
Thanks so much for replying! Dom
Response:
Lori&Mike <mpow…@nospamthe-beach.net> wrote in message
news:v1qkn5ovq4cl59@corp.supernews.com… > Thank your lucky stars no apnea. Apnea and insomnia are killers. > At first you sound like a classic Delayed Sleep Phase Syndrome (DSPS) person to me > but the never feeling rested throws me. Are you able to sleep when you want to > (like on a weekend) and you still feel no better? Could be you built up such a > sleep deprivation amount (sleep debt) that it would take weeks of sleeping when > your body (not social demands/work) tells you to.
I do believe part of my problem is a major case of sleep debt. It’s almost as though the amount of sleep I get is actually not a factor in how I feel. When I was in college there were days I would get only three or four hours of sleep. I’d feel just as crappy as those days in which I got twelve or thirteen. The desire to sleep was always present, even if I had received a larger than average amount. For instance, on a weekend now I might go to bed around 2am, get up at 1pm to eat and end up back in bed from 3pm to 7pm and never feel rested the entire time. I’ve never had good sleep habits, so if this is a case of sleep dept combined with Delayed Sleep Phase, is there any hope? The option of simply sleeping off that debt of course does not exist with needing to work. I’d be happy if I could get by on nine hours and actually feel good when I woke up. Thank you so much for all the links…seems like I have much reading to do. It seriously just hit me out of the blue yesterday that there might be sources of information on sleep problems…I’d just never considered it before. > Now to the sleep clock adjusters. One is called CHRONOTHERAPY. You stay > awake a few hours longer each day until you roll your sleep clock forward to where > you’d like it.
This sounds interesting and seems like it works but I don’t see how practical it could be. How many people can really afford to take off a week from work to roll their clock forward? Any treatment I try will have to factor in my work schedule > Insomnia can be difficult to treat because most people won’t stick to the rigid > requirements needed to adjust the sleep cycle (I’m one of them ). I adjust my > sleep clock when I need to, otherwise I let nature take it’s course. Hope this > helps.
I think my other problem in this will be that I’m not a very good self motivator…sticking to things is difficult for me. Thanks again for the info and links! Sethran
Response:
Tal <beth…@hotmail.com> wrote in message
news:avjtrc$gbjve$1@ID-148111.news.dfncis.de… > you should proably get some tests done (if you haven’t already) to check for > things like thyroid problems.
I’ve actually been tested many times for thyroid and hormone problems. In fact, that’s about all my regular doctor ever does. Her solution to everything is to do a basic blood test, than ignore me when the results don’t show anything. So I know I’m clean on most basic metabolic and hormone disorders, including things like lupus and mono. Sethran – Hide quoted text — Show quoted text –
Response:
Just a newbie here desperately seeking help. I’m a 22 year old male in general good help and suffer from late onset of sleep (according to my sleep doctor). Basically, I’m just tired all the time. I can sleep twelve hours or more at a stretch. It often takes me several hours to fall asleep, though once I actually fall asleep I don’t tend to wake up. I NEVER feel fully rested, no matter how much or how little I sleep. I think about sleep all the time…my number one desire most of the time is to sleep. I work full time and on my days off I usually just sleep all day instead of going out. My general schedule goes like so… Wake up at 1:20pm Work from 2:30pm-11:00pm Go to Bed 2:00amish Lather, Rinse, Repeat I’ve had a sleep study done. Nothing significant was shown. I don’t have sleep apnea, I don’t have narcolepsy. My sleep doctor basically told me that this is just the way I am and I just have to get used to it. You can understand that this was not the most encouraging thing I’ve ever heard. I feel like my life is slipping away without really living it. I’ve tried sleeping pills to get to bed earlier…they don’t really work for me at all. Oddly, if I lay down during the day I tend to fall asleep more quickly than when I try to sleep at night, but even than I tend to sleep for very long periods of time. I’ve tired forcing myself to get up early to "reset" my biological clock but I feel so tired I always end up back in bed until I have to go to work. Other factors that might be important…I do have a minor tremor disorder that makes my hands shake. I’ve suffered from sleep paralysis in the past, though this rarely happens now. I tend to be a lucid dreamer…I usually have very clear, detailed dreams and usually know I’m dreaming. It was thought I might have a slight seretoin level imbalance and I was put on a very low dose of Prozac (10mg). The Prozac had the effect of making my brain go absolutely haywire and I had to stop it after only a few days (it was amazing…like static over my thoughts). I don’t suffer from depression or any other related problems. Was my sleep doctor right? Am I doomed to a life lived like a zombie, refusing to go out with friends because the call of my bed is too strong? I can remember feeling like this since I hit puberty, really…though even as a child I can remember still being in bed at 10am when my friends came over and getting yelled at for it. I have plans for my life…I want to write a book and be a published author but everything seems out of reach when I can’t imagine staying awake long enough. ANY thoughts would be helpful. Dom
Response:
Dom Runner wrote: > Just a newbie here desperately seeking help. I’m a 22 year old male in > general good help and suffer from late onset of sleep (according to my sleep > doctor). Basically, I’m just tired all the time. I can sleep twelve hours > or more at a stretch. It often takes me several hours to fall asleep, > though once I actually fall asleep I don’t tend to wake up. I NEVER feel > fully rested, no matter how much or how little I sleep. I think about sleep > all the time…my number one desire most of the time is to sleep. I work > full time and on my days off I usually just sleep all day instead of going > out.
This is pretty much the same story for most of us…. before treatment. > My general schedule goes like so… > Wake up at 1:20pm > Work from 2:30pm-11:00pm > Go to Bed 2:00amish > Lather, Rinse, Repeat > I’ve had a sleep study done. Nothing significant was shown. I don’t have > sleep apnea, I don’t have narcolepsy.
It would be in your best interest to post the results (written) of all your sleep tests. Many readers here have posted their results and after hearing what we had to say, went back their doc and said, "What the, hey?" > My sleep doctor basically told me > that this is just the way I am and I just have to get used to it. You can > understand that this was not the most encouraging thing I’ve ever heard.
Yes, I suspect you live where most of us live and probably use the same doctor. Is his name Useless….. Dr. Useless? Is he a certified sleep doc or just one who found it to be an interesting and money making field? > I > feel like my life is slipping away without really living it. I’ve tried > sleeping pills to get to bed earlier…they don’t really work for me at all. > Oddly, if I lay down during the day I tend to fall asleep more quickly than > when I try to sleep at night, but even than I tend to sleep for very long > periods of time. I’ve tired forcing myself to get up early to "reset" my > biological clock but I feel so tired I always end up back in bed until I > have to go to work. > Other factors that might be important…I do have a minor tremor disorder > that makes my hands shake. I’ve suffered from sleep paralysis in the past, > though this rarely happens now.
IMHO, your certified sleep doc should be nothing less than a neurologist. > I tend to be a lucid dreamer…I usually > have very clear, detailed dreams and usually know I’m dreaming.
In the treatment of obstructional sleep appnea, it’s my general conclusion that recalling dreams is not good. It means you are not fully asleep, since it is my understanding that most dream recollection comes about if you awaken during a dream. I’m hoping others will confirm this. > It was > thought I might have a slight seretoin level imbalance and I was put on a > very low dose of Prozac (10mg). The Prozac had the effect of making my > brain go absolutely haywire and I had to stop it after only a few days (it > was amazing…like static over my thoughts). I don’t suffer from depression > or any other related problems.
You might want to try to find a diplomated neuropsychiatrist/psychopharmacologist to make a final determination of the state of your mind. Who, may I ask, prescribed the Prozac for you? Dr. Useless? > Was my sleep doctor right? Am I doomed to a life lived like a zombie, > refusing to go out with friends because the call of my bed is too strong? I > can remember feeling like this since I hit puberty, really…though even as > a child I can remember still being in bed at 10am when my friends came over > and getting yelled at for it. I have plans for my life…I want to write a > book and be a published author but everything seems out of reach when I > can’t imagine staying awake long enough. ANY thoughts would be helpful. > Dom
There should be a number of additional responses to your posts, includng other authors! Hang in here and be sure the read the responses. — Sleep well/eat well/be well Norm To email replace nospam with rr
Response:
NormC wrote: > Dom Runner wrote:
[cut] > > I tend to be a lucid dreamer…I usually > > have very clear, detailed dreams and usually know I’m dreaming. > In the treatment of obstructional sleep appnea, it’s my general conclusion that > recalling dreams is not good. It means you are not fully asleep, since it is my > understanding that most dream recollection comes about if you awaken during a dream. > I’m hoping others will confirm this.
What I was trying to say here is that for those of us with OSA, recalling dreams is not good. Perhaps it is another indicator of your sleep problem. I know you don’t have OSA. [cut] — Sleep well/eat well/be well Norm To email replace nospam with rr
Response:
Following up my own post, but one thing I forgot to include… I seem to have an issue with my body temperature sky rocketing during the night. I’ve never actually taken my own temperature during this time and I’m not sure if it is really my actual temperature rising or just that my idea of temperature changes. During the day I get easily cold and like thick clothes and jackets. Right now it’s the middle of winter and very bitter out and I have to sleep with the window wide open, the heat off, and a fan on high. Anything less and I feel so HOT I just can’t sleep. When I wake up in the morning I can barely stand to get out of bed because the room now feels freezing. This personally baffles me. The sleep doctor had no suggests for it or idea of the case and actually didn’t seem very interested. I don’t know if it’s related or significant or if I’m just being odd. Dom
Response:
"Dom Runner" <domrun…@comcast.net> wrote in message
news:7nudnTBRcuvK3YCjXTWcoQ@comcast.com… – Hide quoted text — Show quoted text -> Following up my own post, but one thing I forgot to include… > I seem to have an issue with my body temperature sky rocketing during the > night. I’ve never actually taken my own temperature during this time and > I’m not sure if it is really my actual temperature rising or just that my > idea of temperature changes. During the day I get easily cold and like > thick clothes and jackets. Right now it’s the middle of winter and very > bitter out and I have to sleep with the window wide open, the heat off, and > a fan on high. Anything less and I feel so HOT I just can’t sleep. When I > wake up in the morning I can barely stand to get out of bed because the room > now feels freezing. This personally baffles me. The sleep doctor had no > suggests for it or idea of the case and actually didn’t seem very > interested. I don’t know if it’s related or significant or if I’m just > being odd. > Dom
Thank your lucky stars no apnea. Apnea and insomnia are killers. At first you sound like a classic Delayed Sleep Phase Syndrome (DSPS) person to me but the never feeling rested throws me. Are you able to sleep when you want to (like on a weekend) and you still feel no better? Could be you built up such a sleep deprivation amount (sleep debt) that it would take weeks of sleeping when your body (not social demands/work) tells you to. Anyway, DSPS (link further down) is kind of what you sound like to me and can be common in younger people. Disclaimer: This info really assumes you have been to a doctor and no underlying medical/mental problem exists! Plus, this is a rehash post, so I apologize to anyone reading this info for the millionth time ) A good site for info is http://www.sleepdisorderchannel.com/insomnia/treatments.shtml (lots of info on this site) In addition to those sleep hygiene suggestions; I don’t have clocks where I can see them in the bedroom, keep it a little cooler, and a warm bath before bed (not too hot) is great for relaxing muscles. Try to darken the room (especially if it’s daylight) and I run a plain old box type fan to drown out noises (white noise). If your mind is racing get up and write down everything that is bothering you, don’t stay in bed as it conditions your mind to wake up when you enter the bedroom. Also, medication (especially sleep pills) can mess up sleep and Sleep Hygiene. They not only affect your sleep cycle, they loosen throat/tongue muscle tone (can worsen sleep apnea). DON’T stop any medication without permission from your doctor Maybe do a www.google.com search for side effects of anything you take very often, includes herbal stuff. You could do a Sleep Diary http://www.sleepfoundation.org/publications/diary.html for both day and night. The idea is to see if there is something during the day upsetting night time sleep (like speaking to one’s MOM 
Seriously, do this very carefully for a couple weeks and you might be surprised. Now to the sleep clock adjusters. One is called CHRONOTHERAPY. You stay awake a few hours longer each day until you roll your sleep clock forward to where you’d like it. Will reset your clock forward until you are getting sleepy at whatever time you set it at. Apparently, it is more difficult to go backwards (no kidding:). This worked for me but is tough to keep at the time you want. Once you achieve your goal sleep pattern, you HAVE to get up at the same time everyday and helps to get some sunlight. Detailed info on both cronotherapy (includes a schedule example) and bright light at http://www.sleepdisorderchannel.net/dsps/treatment.shtml (explains DSPS) Cronotherapy is tough since you are forcing yourself to stay up later each day for a week. Also, requires sleeping during the day as you keep rolling forward so tough to attend school or work that week. I usually do this until I’m sleepy at say 10 PM and then get up after eight hours of sleep and immediately get some sunlight. It really works but you have to get up at the same time each morning and get some sunlight to maintain the pattern! Best is to get some sunlight when you FIRST wake up. There are also light boxes that you stare at first thing in the morning. This can work also but the boxes aren’t cheap and you have to do it everyday or your clock will go back to what is normal for you. There is also a sleep-restriction therapy http://hvelink.saint-lukes.org/library/healthguide/IllnessConditions/… This is a bear and damn tough to do but I have read some success for this method. Insomnia can be difficult to treat because most people won’t stick to the rigid requirements needed to adjust the sleep cycle (I’m one of them ). I adjust my sleep clock when I need to, otherwise I let nature take it’s course. Hope this helps. Mike — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.438 / Virus Database: 246 – Release Date: 1/7/2003
Response:
> — > _Deirdre http://deirdre.net > A: No. > Q: Should I include quotations after my reply? 