"Boulderdash" <coxsportsd…@gmail.com> wrote in message

news:1111592884.339459.280400@l41g2000cwc.googlegroups.com… <some snipping to keep things shorter> > If I could take 800 or even 600mg of Provigil, I would, as 500 doesn’t > seem to make a difference. She mentioned Dexedrine, but that scares the > crap outta me. She’s very cautious about that, as where we live, she > has to write it for one month each and I must pick it up personally. > It’s classified a Class 2 drug. I go back in 3 months, but if it gets > worse, I may be seeing her sooner.

It sounds strange that she’s prepared to try harder drugs, but not higher dosages of the one you’re on. I get the feeling that your condition is a new area for her, and you’d be much better off looking for a specialist. > Anyway, that’s where I stand right now.I really have to worry about the > cataplexy in the evenings, and whenever I get too excited. I’m gonna > try and keep doing this routine until it stops working. And I hope it > doesn’t get too bad to hinder me from working completely. I’m all but > useless at home now. > Pete, any more suggestions or words of advice are greatly appreciated > from me. I seem to get most of my knowledge on stuff from your end of > the pond.

The site I started with was www.narcolepsy.org.uk. I requested info from them, and from there I was sent several other sites, and a fair bit of literature. I’m sure they wouldn’t mind sending you some, even though you’re not in the UK. Apart from that, most of the information I have came from my neurologist, although the occasional Google for ‘narcolepsy’ is interesting – don’t just stick to the web results, have a look on the news pages too. Oh, and if you come across the bunch of clowns who are currently suggesting Provigil as a great cure for jet lag, ignore them – they’re in dire need of a set of morals. Anyway, Provigil alone won’t help your cataplexy. Even on the high doses, I was still getting frequent attacks – like you, when startled, excited, etc. Without getting too explicit, let’s just say that my wife now wants me to go on a diet, after an attack in the bedroom… The fact that you sound as bad, if not worse, than me, and you’re still driving around scares the living daylights out of me. I’m glad that the pavements I’ll be on are far, far away from you – but then, I don’t have all the details of your case, and I might be reading too much into it, based on my own experiences. I know it’s horrible to not be able to drive – being dependant on public transport and other people is a pain – but my situation got worse in the last few months, and now I can’t even leave the house without having someone along who understands my condition. So, I find I’m just becoming more and more reliant on other people, which is a pain in the neck. By the way, you’re not useless at home – you’re just not as useful as you used to be. Believe me, I know how you feel. I’ve had to simply make sure that I help around the house in every way that I can, whenever I can, firstly so that everything doesn’t become my poor wife’s job, and secondly, so that I don’t sink into a habit of believing that I can’t do certain things, when all it takes sometimes is extra precautions, or an adjustment to the way I do them. For example, it would be insane for me to go up a ladder to paint the outside of our house now – but there’s nothing wrong with a brush or roller on a long pole! Good luck, and, as this group shows, you’re not alone in this, no matter how much it feels like it sometimes!

Response:

Are you taking medication for your cataplexy?  If you’re only taking Provigil (stimulant) for your EDS (sleepiness) you’re going to have trouble. Are you seeing a Neurologist or a Sleep Specialist?  If you can find one, get to a Board Certified Sleep Specialist.  This is not a disease that just any doctor should treat. Which of the four major symptoms do you have and to what degree? I’ve been lucky to find a good Specialist and also I’ve been able to dig up quite a bit of in-depth information about narcolepsy.  It hasn’t been easy.  Unless your doctor specialises in sleep medicine, chances are he(or she) may not have all of the information that you both need in order to treat your illness. As for the  "FDA limit" of 400mg per day, that was my starting dosage and I’m due to go in next week to increase that and also my Xyrem(for cataplexy) dosage.  Most of the Narcoleptics that I’ve spoken to take a higher dosage.  If you’d like some contact info for some Narcolepsy groups online and also a patient to patient hotline (free), let me know and I’ll be happy to share. It really does help when you’re able to write to or speak to someone who has the same experiences… Lisa in Texas "Boulderdash" <coxsportsd…@gmail.com> wrote in message

news:1111592884.339459.280400@l41g2000cwc.googlegroups.com… – Hide quoted text — Show quoted text -> Saw my Neurologist yesterday. I’m not sure what the physician limits > are in the US to prescribe Provigil, but she does not feel comfortable > exceeding the FDA limit of 400mg a day. Also, and again, this may be > the difference in UK and US methodology, she wants me to continue to > take the caffeine pills before I drive, as that seems to help. I did > some research on the web and couldn’t find anything about Provigil and > caffeine pills contradicting themselves, just personal experiences. I’m > not doubting you Pete. Trust me. Do you know where I can read up on > this? I love learning new things. > My blood pressure on this stuff was 130/78, so that was pretty normal. > My wife is going in for a sleep study of her own as she has sleep apnea > and is on a CPAP machine. My doc says once she gets straightened out > and adjusted on her apnea, my wife must take over the driving. But > until then, she wants me to take whatever I need to stay awake. Driving > to work is not bad. It’s driving home. > If I could take 800 or even 600mg of Provigil, I would, as 500 doesn’t > seem to make a difference. She mentioned Dexedrine, but that scares the > crap outta me. She’s very cautious about that, as where we live, she > has to write it for one month each and I must pick it up personally. > It’s classified a Class 2 drug. I go back in 3 months, but if it gets > worse, I may be seeing her sooner. > Anyway, that’s where I stand right now.I really have to worry about the > cataplexy in the evenings, and whenever I get too excited. I’m gonna > try and keep doing this routine until it stops working. And I hope it > doesn’t get too bad to hinder me from working completely. I’m all but > useless at home now. > Pete, any more suggestions or words of advice are greatly appreciated > from me. I seem to get most of my knowledge on stuff from your end of > the pond.

Response:

Saw my Neurologist yesterday. I’m not sure what the physician limits are in the US to prescribe Provigil, but she does not feel comfortable exceeding the FDA limit of 400mg a day. Also, and again, this may be the difference in UK and US methodology, she wants me to continue to take the caffeine pills before I drive, as that seems to help. I did some research on the web and couldn’t find anything about Provigil and caffeine pills contradicting themselves, just personal experiences. I’m not doubting you Pete. Trust me. Do you know where I can read up on this? I love learning new things. My blood pressure on this stuff was 130/78, so that was pretty normal. My wife is going in for a sleep study of her own as she has sleep apnea and is on a CPAP machine. My doc says once she gets straightened out and adjusted on her apnea, my wife must take over the driving. But until then, she wants me to take whatever I need to stay awake. Driving to work is not bad. It’s driving home. If I could take 800 or even 600mg of Provigil, I would, as 500 doesn’t seem to make a difference. She mentioned Dexedrine, but that scares the crap outta me. She’s very cautious about that, as where we live, she has to write it for one month each and I must pick it up personally. It’s classified a Class 2 drug. I go back in 3 months, but if it gets worse, I may be seeing her sooner. Anyway, that’s where I stand right now.I really have to worry about the cataplexy in the evenings, and whenever I get too excited. I’m gonna try and keep doing this routine until it stops working. And I hope it doesn’t get too bad to hinder me from working completely. I’m all but useless at home now. Pete, any more suggestions or words of advice are greatly appreciated from me. I seem to get most of my knowledge on stuff from your end of the pond.

Response:

H-m-m-m-m, I seem to be experiencing much the same as you.  You can read some of my posts listed under ‘Alertec’ experiences. I was also recently diagnosed with narcolpsy and am still awaiting a 2 day/2 night study to confirm.  In the meantime, I am on 200mg modafinil (Provigil/Alertec) increasing every two weeks and it doesn’t seem to be doing anything to help. I am currently unable to work.  I am seeking the same solution as you so please keep posting any you come up with. I also have been concerned that there might be something else going on in my head.  How you continue to work feeling like that is beyond me. I wish I could.  I am barely making it right now. But you will find some very good, supportive people in this group as I have, so hang in there and keep searching.  Please post the results of the visit with your neurologist if you would be willing to share.

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"Boulderdash" <coxsportsd…@gmail.com> wrote in message

news:1111444622.860417.263570@l41g2000cwc.googlegroups.com… – Hide quoted text — Show quoted text ->I was recently diagnosed with narcolepsy, although the symptoms have > been ongoing for some time now. The last few months have been very hard > as the sleepiness has worsened to the point where absolutely nothing > can keep me awake. I was put on Provigil. I am at the max amount now, > 400 mg a day. But I always need more "help" to keep me awake. Here’s my > routine everyday except weekends. In the morning, I drink one cup of > coffee, a red bull, a caffeine pill (200mg) and a Provigil (200 mg). I > am at my most awake for the next few hours, enough to get me to work (1 > hour drive) and get started at my job, then I start slowing down around > lunch and by 3 I’m almost unconscious. I have been sneaking 100mg of > Provigil at lunch time as a boost. I take another caffeine pill, > Provigil and a red bull (if I have one left) and that barely gets me > home (another 1+hour home). By the evening, I am so tired and groggy I > look and act drunk. The cataplexy is so bad at night and when I’m > driving home it’s scary. I’m at my wits end right now, as functioning > is very difficult. Staying awake all day long is almost impossible, > even with all the stuff I take. I don’t want to take so much, but it’s > keeping me from falling asleep at the wheel. I see my neurologist > Tuesday. I will talk with her about other solutions. > Now, if any of you have narcolepsy this bad, what have you done and > what can be done? The narcolespy has gotten worse extremely fast, > almost so fast I’m worried that it might be caused by a tumor. Can this > happen? I’m really looking for some fellow narcs with a few words of > advice. Any help would be appreciated. Thanks.

Mine is that bad, but I assure you, you are NOT on the maximum dosage. I’m currently on 600mg a day, and my neurologist and GP have both said that they might increase it to 800mg in four months time, depending on my progress. So far, the 600mg a day seems to be helping me a lot. I take 200mg first thing in the morning (6am-ish), and then another 400mg at about midday. I rarely go into a deep sleep before 6pm, on that dosage. For the cataplexy, my neurologist prescribed an antidepressant. It’s not that I’m depressed (although this is a depressing condition to have!), it’s that many of the ingredients in it combat the effects of cataplexy. Again, so far, so good. I’m much better than I was. Now for the bad news. If your condition is that bad, you should not be driving – under any circumstances. I don’t know what the law is wherever you live, but here in the UK, I was obliged to notify the DVLA the moment I was diagnosed. They liased with my doctor, and now I have no license. It’s a pain, but I’d rather have it that way than spend my life with someone’s blood on my hands, especially given that I DID fall asleep at the wheel on a couple of occasions – thankfully, without any serious consequences. I doubt if it’s a tumour that’s affecting you, but a newsgroup is not the place to ask – a medical professional is. my narcolepsy also deteriorated very rapidly. It does sound to me as if you are very stressed, and scared by what’s happening to you, and that, too, can cause the sleepiness to become worse. A depressive state also adds to it, and it is very common for narcoleptics to slip into a depressive state, because of the impact the condition has on their day-to-day lives. Oh, one last thing – when I was first prescribed Provigil, both the neurologist and the pharmacist where I filled the prescription advised me NOT to take any caffeine with it at all, as it could have nasty side effects. On the odd occasions when I have had anything with caffeine in, I have felt very tired fairly soon afterwards. What you think is keeping you awake might actually be having the opposite effect – it’s worth asking an expert. I do know, if I drank as much as you say you do, together with my Provigil, I’d be out cold most of the day. Good luck – but take these questions to a doctor, preferably one who specialises in sleep disorders!

Response:

I was recently diagnosed with narcolepsy, although the symptoms have been ongoing for some time now. The last few months have been very hard as the sleepiness has worsened to the point where absolutely nothing can keep me awake. I was put on Provigil. I am at the max amount now, 400 mg a day. But I always need more "help" to keep me awake. Here’s my routine everyday except weekends. In the morning, I drink one cup of coffee, a red bull, a caffeine pill (200mg) and a Provigil (200 mg). I am at my most awake for the next few hours, enough to get me to work (1 hour drive) and get started at my job, then I start slowing down around lunch and by 3 I’m almost unconscious. I have been sneaking 100mg of Provigil at lunch time as a boost. I take another caffeine pill, Provigil and a red bull (if I have one left) and that barely gets me home (another 1+hour home). By the evening, I am so tired and groggy I look and act drunk. The cataplexy is so bad at night and when I’m driving home it’s scary. I’m at my wits end right now, as functioning is very difficult. Staying awake all day long is almost impossible, even with all the stuff I take. I don’t want to take so much, but it’s keeping me from falling asleep at the wheel. I see my neurologist Tuesday. I will talk with her about other solutions. Now, if any of you have narcolepsy this bad, what have you done and what can be done? The narcolespy has gotten worse extremely fast, almost so fast I’m worried that it might be caused by a tumor. Can this happen? I’m really looking for some fellow narcs with a few words of advice. Any help would be appreciated. Thanks.

Response:

Hello, I’m in the UK, and I was diagnosed as narcoleptic via sleep latency tests a little over a year ago, after going through a lot of stress. I went from putting in 12-14 hours of work a day, and enjoying it, with a really good memory, to not being able to stay awake for more than about 4-5 hours a day without tablets, and forgetting things that had happened or been said a short while ago. While the sleep attacks are reasonably well under control, through Provigil, my memory is getting worse and worse. I am now forgetting entire days at a time – for instance, I have very little recollection of what I did last week. I’m also experiencing an increase in cataplexy – before, it was slight – an arm or a leg would go limp – now it’s total body paralysis for up to a quarter of an hour. My GP doesn’t seem to think that the forgetfullness is part of the narcolepsy, but has yet to offer anything substantial as to what it might be. I will be seeing my neurologist, but, being on the NHS, I’m not too likely to see him for at least a month. A few web sites that I’ve seen do mention memory loss and confusion, but my GP’s medical books apparently do not. Has anyone else experienced this, or can anyone shed any light on it? Thanks!

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I don’t really have any advice as yet but I can tell you that you are not alone in what you are experiencing.  I also have been diagnosed with narcolepsy after mslt’s and now have to go for another 2 day/2 night study to confirm again. (?) Mine also has come out after going through extreme stress. Although I apparently have had this my entire life (which explains  the symptoms I have had all my life) it most recently became debilitating and prevents me from being able to work right now. I require naps every few hours. The symptom that sent me to my doc in the first place was the cataplexy which was severe at work. My muscles felt like they were melting out from under me and I would have to quickly lie down and/or nap. I was falling asleep everywhere and have extreme fatigue. My first sleep study they discovered I have sleep apnea but after being on the CPAP w/CFLEX for almost a year there has been very little improvement. From what I have been told (and read) the lack of memory thing is all part of it and I suffer from that too and it is very frustrating because I feel so stupid at times when I can’t remember simple things I have done even the day before. Embarrassing too. And my memory has always been good. Also I have the blurry vision which is apparently another symptom. I asked my sleep doc why my first symptoms of narcolepsy are not as severe right now but this cataplexy has virtually taken over my life and he said the cataplexy is the last final symptom to show up. I am not on any medication for this yet. I have to wait until after my next study. But you are not alone with that memory thing. My brain feels foggy all the time. If you are very concerned about it, definitely ask your doctor to check you out for some other cause. However, I think your GP’s medical books must not be up to date with regard to the latest findings in sleep research. Hang in there. I would be interested in hearing if you have experienced any side effects from the Provigil since I was told I will probably be prescribed that in the near future and I am concerned since I have drug sensitivities.

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"CPAPHATER" <cpapha…@nospam.hotmail.com> wrote in message

news:8cd7200ad0609b1dd7431b33c962f616@localhost.talkaboutsupport.com… >I don’t really have any advice as yet but I can tell you that you are not > alone in what you are experiencing.  I also have been diagnosed with > narcolepsy after mslt’s and now have to go for another 2 day/2 night study > to confirm again. (?) > If you are very concerned about it, definitely ask your doctor to check > you out for some other cause. However, I think your GP’s medical books > must not be up to date with regard to the latest findings in sleep > research. Hang in there. > I would be interested in hearing if you have experienced any side effects > from the Provigil since I was told I will probably be prescribed that in > the near future and I am concerned since I have drug sensitivities.

Thank you for the reply. I will be getting a second opinion in April, but that’s a nice long time to wait! I have had so many tests, I think the national health service has more of my blood than I do! Everything they have done, every scan, every blood test, you name it, points to narcolepsy. I agree that my GP’s books are horribly out of date – I’ll be bringing that up with her very, very soon! As far as the Provigil goes, here’s what I found: I started off on 100mg a day. The initial improvement was amazing. I stopped falling asleep, I could concentrate a bit more, and felt human again. That lasted about 3 months. Then, I was back where I’d been before. They increased it to 200mg a day. Again, 3 months later, another increase. I’m currently on 400mg, and have been for 4 months, so here’s hoping it lasts. The one big problem I found with side effects was not so much when I was taking it, but one weekend when I couldn’t get a repeat prescription, and ran out of tablets for a day. The best description I can give you is ‘cold turkey’. Any of these stupid newspaper articles doing the rounds calling it a wonder drug, or a concentration improver, with no side effects are talking absolute rubbish. It CAN be addictive, and I am very obviously now in that state. Still, if I’m going to be on it for the rest of my life, as my doctor says, then I’m all right – so long as I can get it regularly. Thanks again for all the information – it’s very, very helpful.

Response:

I’m glad you are getting a second opinion in April. It’s really not that far away. I still have to get my next study booked so I may be looking at the same time span. It’s good you can discuss things with your GP.  There is alot of very good information from the people in this site.  I am relatively new here and have found very much useful info here. I find that in the field of sleep disorders you REALLY have to be knoweledgable so you can discern the good sleep docs from the quacks and believe me, I have seen a few. Your NHS sounds like a vampire.  I have been through similar experiences with numerouse tests (blood and otherwise). Thanks so much for sharing your experience with Provigil.  I am sensitive to most meds and that has been a concern.  I will, of course, take it if prescribed because anything is better than how I am feeling right now. I too was under the impression that it was non-addictive.  I guess you are right, if we have to be on for the rest of our lives, then so be it. My only concern would be if the dose has to constantly be increased, where would it end, and what about long term effects? I guess we don’t really have too much choice right now. I will let you know how things go when I have my study and if and when I am prescribed the meds and how they affect me. Thanks again for sharing and please post any further info re your second opinion in April.

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Hi I have had narcolepsy and cataplexy since I was 18 years old. (Today I’m 39 years old). My doctor has finally got accept from Danish authority to test Xyrem on me. Dam I was happy and looked forward to see if it could help me. But my happiness was quite short, because I was told that Xyrem for the test would cost the hospital around dkr. 500.000,00 ( $ 70.000,00) , and that they would not accept to pay. I really can’t understand that Xyrem is so expensive. Therefore I’m interested in the following two questions: 1:   In which Countries is Xyrem approved as treatment for narcolepsy? 2:   What is the price for Xyrem in your country? Best regards R.B.P. / Denmark

Response:

On Sat, 26 Jun 2004 19:47:31 GMT, R.B.P. pontificated at length: >My doctor has finally got accept from Danish authority to test Xyrem on me. >Dam I was happy and looked forward to see if it could help me. >But my happiness was quite short, because I was told that Xyrem for the >test would cost the hospital around dkr. 500.000,00 ( $ 70.000,00) , >I really can’t understand that Xyrem is so expensive.

I did some research into Xyrem. Orphan Medical (the company that developed Xyrem) is on the stock market in the USA, so they file what’s called a Form 10-K with the US Securities and Exchange Commision. All my info is from the latest Form 10-K: http://www.sec.gov/Archives/edgar/data/929548/000089710104001131/orph… >Therefore I’m interested in the following two questions: >1:   In which Countries is Xyrem approved as treatment for narcolepsy?

So far, it only appears to be the US. Another company (Celltech PLC) has the rights for Europe, but it’s not yet approved there. >2:   What is the price for Xyrem in your country?

They state: "We estimate that the average revenue per patient with Xyrem is approximately $4,000 annually." It does have a restricted distribution system… even if that doubles the price, the number comes out to $8,000 a year. — "So many sneakers, not enough feet." http://sneakers.pair.com/

Response:

- Hide quoted text — Show quoted text -"R.B.P." wrote: > Hi > I have had narcolepsy and cataplexy since I was 18 years old. > (Today I’m 39 years old). > My doctor has finally got accept from Danish authority to test Xyrem on me. > Dam I was happy and looked forward to see if it could help me. > But my happiness was quite short, because I was told that Xyrem for the > test would cost the hospital around dkr. 500.000,00 ( $ 70.000,00) , > and that they would not accept to pay. > I really can’t understand that Xyrem is so expensive. > Therefore I’m interested in the following two questions: > 1:   In which Countries is Xyrem approved as treatment for narcolepsy? > 2:   What is the price for Xyrem in your country? > Best regards > R.B.P. / Denmark

The website: http://www.rxlist.com/cgi/generic3/xyrem.htm  will give you some information and a drugstore link to follow. You should be able to send them an email to get a price quote. HTH Bob

Response:

Hi Yes I know Celltech is the European distributor of Xyrem. We will also get Xyrem through Celltech Denmark. Where did you found that $ 4.000 statement? Maybe that could help me if I then offered the hospital to pay it myself. BR R.B.P. / Denmark Charles Perrin <c.l.perrinANTIS…@att.net> wrote in news:ukmrd01246fudte7sdn4skn02d52is72rt@4ax.com: – Hide quoted text — Show quoted text -> On Sat, 26 Jun 2004 19:47:31 GMT, R.B.P. pontificated at length: > I did some research into Xyrem. Orphan Medical (the company that > developed Xyrem) is on the stock market in the USA, so they file > what’s called a Form 10-K with the US Securities and Exchange > Commision. > All my info is from the latest Form 10-K: > http://www.sec.gov/Archives/edgar/data/929548/000089710104001131/orphan > 042726_10ka.htm > So far, it only appears to be the US. > Another company (Celltech PLC) has the rights for Europe, but it’s not > yet approved there. > They state: "We estimate that the average revenue per patient with > Xyrem is approximately $4,000 annually." > It does have a restricted distribution system… even if that doubles > the price, the number comes out to $8,000 a year.

Response:

On Sun, 27 Jun 2004 02:14:12 GMT, R.B.P. pontificated at length: >Yes I know Celltech is the European distributor of Xyrem. >We will also get Xyrem through Celltech Denmark. >Where did you found that $ 4.000 statement?

The latest Orphan Medical 10-K (at the URL in the message you quoted and then asked "Where did you found that $4000 statement?). >Charles Perrin wrote: >> All my info is from the latest Form 10-K: >> http://www.sec.gov/Archives/edgar/data/929548/000089710104001131/orphan >> 042726_10ka.htm

– "So many sneakers, not enough feet." http://sneakers.pair.com/

Response:

fortwynt wrote: > I have sort of a problem.  Ever since I was a young teenager (25 now), I’ve > had a sleeping disorder(or more than one). > ……………………………………….I just wish I could convince > him to listen > to me….I have had at least 5 concussions in my lifetime and I feel like > this could be tied to my problems…he has nothing to add to that theory > other to imply that my ONLY problem is Apnea…

Have you had an MRI and/or CT-Scan after those concussions?  An EEG would also be in order. If you haven’t had any of those, ask your doctor for a referral to a neurologist so those can be performed. Brain damage can cause a lot of funny things to happen. Bob

Response:

"fortwynt" <brian.wal…@camc.org> wrote in message

news:b2f926fea9d630eb9882cb84368cceca@localhost.talkaboutsupport.com… [many snips...] >My main symptoms were sleep paralysis (on a highly > regular and abnormal basis) accompanied by extremely vivid and lucid > dreams often,

See www.arts.uwaterloo.ca/~acheyne/S_P.html for more on this… >and the tendancy to fall asleep all the sudden many times a > day when I felt I wasnt that tired to begin with.

This is a rather strong indicator of sleep deprivation – and not of just "sleep time", but of reaching all four sleep stages (likely caused by sleep apnea, if you get what you think of as "good", long daily sleep). I do have OSA, though, but I did not feel tired – but I did go to sleep unexpectedly and often during the day, even with 8-9 hours of "sleep" at night. This has changed with the use of CPAP gear, even though I now manage only 4.5-5.5 hours/day of sleep most days… >Also (later I learned > the term) I have always had what I consider to be mild cataplexy, because > when I am startled in any way, for a split second all of my muscles feel > as though they go limp, almost how I feel when Im having an episode of > sleep paralysis.

I "know the feeling" – this happens to me, too (still, but not as often as before CPAP). At first the triggers were either random, or surprise (or extreme sudden stress) – but now they are random, or food, or cat-related…;-) >  If I’m doing something that is > ’stimulating’ my mind, let’s say driving my car (a standard) I NEVER just > drop off into sleep suddenly because number one I have to shift gears all > the time, and number two I am extremely cautious of everything going on > around me as far as other drivers, so my mind has no problem staying > alert….

WATCH OUT FOR THIS!!!! There may be that first time that you fall asleep while driving, and it may be your last! Or the last for someone you kill! I have fallen asleep while driving (though have never left the road or been in an accident as a result), and I stopped driving due to this (and other "events") about six months ago. I’m considering driving again (with company only!), but I’m still not sure yet when/if I will do it. Cars can kill! > I went to the sleep center, and the first > thing that bothered me was that they wanted to do the study at night, > which would skew the results in my opinion because I NEVER sleep at night, > I work at night and sleep in the day.

All this is not really relevant – all they need to see is what happens during sleep. I slept only 1.5 hours during my test, but that was enough – and only 1 hour during the CPAP titration, and that also was enough. I had another sleep test with the CPAP gear set as titrated, and I got good sleep during that test… > at a later date the doctor > informed me that he was diagnosing me with Apnea, and of course wanted me > to get the CPAP and try it out and eventually use it permanantly…I didnt > like the idea, but i said I would humour him for a month if I could stand > it…well I couldnt…the machine caused me to get far less amounts of > good deep rest than I had originally….eventually I had a followup with > him and he discovered I hadnt used the machine as much as I was supposed > to, and he seemed rather disappointed about it, though I explained my > trouble dealing with it to him….So he says "since you dont wanna use the > machine, there really is no solution for your problem, aside from getting > a new job or a new shift"…

What he said is correct… BTW, failure to use CPAP gear if you need it does not result in just obvious effects of sleep-deprivation, but of more important things like heart-enlargement, arrhythmias, clots/strokes, and eventual heart-failure (a disease…). Failure to use it can be caused by not understanding its importance, or from not being fitted well with an appropriate mask for you, or from not knowing how to optimize gear for best comfort and freedom from air-leaks. People here are good with info about this – and see: =================== FAQ for alt.support.sleep-disorder can be found here http://talhost.net/sleep Newsgroup Archives http://talhost.net/sleep/archives.htm this site is a work in progress – feel free to submit info/articles =================== > I feel that given my history (which I explained > to the Dr.) of severe sleep paralysis, vivid lucid dreaming, mild > cataplexy, and the need for my brain to be constantly stimulated to keep > it from "zoning out", the Doc simply WILL NOT even entertain the notion > that I have narcolepsy.

You may have a form of that, too, but this doesn’t preclude OSA, and the need for treatment of that… If you use a drug that forces alertness when you actually need sleep ("good" sleep…), that can cause problems, or hide the real problems… > I just feel like no one understands at all just how frustrating it is.

"Been there…", but with different issues…;-) Good luck – and I would reconsider use of CPAP gear, though it can take a while to "settle in" with it, and there will continue to be "inconveniences" with its use (but it can be necessary, in not very obvious ways, to your future health…).  –  David Ruether  r…@cornell.edu  http://www.ferrario.com/ruether

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I have sort of a problem.  Ever since I was a young teenager (25 now), I’ve had a sleeping disorder(or more than one).  At the time I had no idea what that was. Over the years I realized, after reading up on the subject of sleeping disorders, that this is what my problem was.  But what was it that was the problem? My main symptoms were sleep paralysis (on a highly regular and abnormal basis) accompanied by extremely vivid and lucid dreams often, and the tendancy to fall asleep all the sudden many times a day when I felt I wasnt that tired to begin with.  Also (later I learned the term) I have always had what I consider to be mild cataplexy, because when I am startled in any way, for a split second all of my muscles feel as though they go limp, almost how I feel when Im having an episode of sleep paralysis.  At any rate it never really presented that MUCH of a problem or inconvenience, though it WAS extremely difficult to stay awake through an hour and a half long class in high school, which resulted in very poor grades come graduation time.  I barely passed, and it was all because i simply could not tolerate sitting still in one place for an hour and a half and listening to someone drone on and on about some boring subject.  The thing is, a couple years ago I took a job in the Information Services department of a local hospital and got stuck on permanent midnight shifts 7pm-7am.  It was then that I realized the full scope and severity of my problems, and I almost lost my job due to the fact that every single night I was dozing off probably 10 or 15 times in here. Here’s whats interesting about it; If I’m doing something that is ’stimulating’ my mind, let’s say driving my car (a standard) I NEVER just drop off into sleep suddenly because number one I have to shift gears all the time, and number two I am extremely cautious of everything going on around me as far as other drivers, so my mind has no problem staying alert….however at my job, it involves sitting down with nothing to do for hours on end, and this is where I run into trouble.  I can sleep all day long, and feel perfectly rested, yet when I come to work and sit down for very long I will start (what I call) "zoning in and out" of consciousness….I normally have absolutely no idea that im doin this until i come out of it, and its not like regular sleep, its not very deep, like the mode "standby" that a computer goes on when left unattended for a period of time.  My mind does this exact thing.  Im not particularly sleepy when this is happening.  I went to the sleep center, and the first thing that bothered me was that they wanted to do the study at night, which would skew the results in my opinion because I NEVER sleep at night, I work at night and sleep in the day.  So they did the one test where I come in and stay all night and sleep till morning, with things hooked up all over me, and the cpap, im sure you are all aware of what its called, I forget now…..at any rate during "calibration" i went out and had to be woken up again…I woke up a few times that I remember during the night as well, but when you are in this situation, its unnatural and an un-normal setting regardless of how bedroom-like they try and make it look, it still isnt the same and still contributes to the results being slightly skewed I would have to say.  Anyway, the next day I had to stay for what I believe was the Multiple Sleep Latency Test, and at a later date the doctor informed me that he was diagnosing me with Apnea, and of course wanted me to get the CPAP and try it out and eventually use it permanantly…I didnt like the idea, but i said I would humour him for a month if I could stand it…well I couldnt…the machine caused me to get far less amounts of good deep rest than I had originally….eventually I had a followup with him and he discovered I hadnt used the machine as much as I was supposed to, and he seemed rather disappointed about it, though I explained my trouble dealing with it to him….So he says "since you dont wanna use the machine, there really is no solution for your problem, aside from getting a new job or a new shift"…which is just not possible…so finally he says "i do have this drug, Provigil, and blah blah try it out, insurance may not pay for it(it did magically even though its usually exclusively used for Narcolepsy, and they will only approve it for such, remember I was diagnosed with Apnea)…..well see thats the thing, I always felt that i did have NARCOLEPSY….my doctor simply WILL NOT accept it, of course one could say "well he’s the doctor not you so he knows best" but I dont know if thats entirely true ya know?  I will admit that theres a possibility that I have very MILD apnea (my results DID show that I had woken up a few times in an hour or so, which is why he diagnosed me with Apnea) AND the results didnt seem to show that I had narcolepsy, although my argument is, NOT ONLY was the test done at a time I wouldnt normally have been asleep, it WAS only one day of my life and I hardly think my symptoms are there 24/7.  I feel that given my history (which I explained to the Dr.) of severe sleep paralysis, vivid lucid dreaming, mild cataplexy, and the need for my brain to be constantly stimulated to keep it from "zoning out", the Doc simply WILL NOT even entertain the notion that I have narcolepsy.  Like I said I very well may have mild apnea, I dont dispute it I suppose, but I feel that my REAL problems are caused by either Narcolepsy OR some type of Attention problem (which may be linked to narcolepsy anyway, has yet to be seen studied enough) because as I said, I am not falling asleep because I am overwhelmingly groggy and tired all day, I am falling asleep because my mind becomes bored or "unfocused" when theres nothing to do, and I simply cannot keep myself from "going on standby mode" over and over again…doesnt have much at all to do with being tired, though being tired ON TOP of it makes it that much worse….so anyway I am on Provigil, my insurance is being good to me at this point by covering it and all.  I must say, it truly is a miracle drug to me in every way.  I’ve never felt more alert and in control of my problem in my WHOLE LIFE…..I take one 200mg pill per day when I get to work at night and it works wonders….although if i dont get AT LEAST 8 hours of sleep during the day, even on the pill, I will still "zone out" if im not careful.  So I guess in the end, the Doc put me on a pill FOR narcolepsy, even though he insists its not that, and I insist it IS, so I guess it worked out after all…I just wish I could convince him to listen to me….I have had at least 5 concussions in my lifetime and I feel like this could be tied to my problems…he has nothing to add to that theory other to imply that my ONLY problem is Apnea…I disagree and am afraid at some point in the future I will have trouble with him and more importantly my insurance company over the doctors insistence toward Apnea…..any info anyone has to give would would really help me out a lot, I just feel like no one understands at all just how frustrating it is.

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.. but does anyone here know what some times causes disorientation with respects to what time it is (and particularily not understanding the clock no matter how hard you try) and where you are when you wake up in the middle of the night? It has happened to me a few times, and I’m sure this is if not common, then at least something most people have experienced once or twice. My theory is that it’s got something to do with too little sleep or a displaced sleep pattern. And a second question. My roommate started singing in his sleep a while ago. I think it was Amazig Grace or something similar. Is this normal?

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On Mon, 12 Jan 2004 03:18:56 +0100, "Magnus Kleming" <mklem…@broadpark.no> wrote: >And a second question. My roommate started singing in his sleep a while ago. >I think it was Amazig Grace or something similar. Is this normal?

Definately not normal. Most sing "The Battle Hymn of the Republic" Sleepy ———————————————– Let’s Kick the Right Wing, Out of the West Wing ———————————————–

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"Magnus Kleming" <mklem…@broadpark.no> wrote in message news:400204d7$1@news.broadpark.no… > .. but does anyone here know what some times causes disorientation with > respects to what time it is (and particularily not understanding the clock > no matter how hard you try) and where you are when you wake up in the middle > of the night? > It has happened to me a few times, and I’m sure this is if not common, then > at least something most people have experienced once or twice. My theory is > that it’s got something to do with too little sleep or a displaced sleep > pattern.

This may not be it, but look up "cataplexy" (not "catalepsy") on Google, and see if it fits well enough… > And a second question. My roommate started singing in his sleep a while ago. > I think it was Amazig Grace or something similar. Is this normal?

Singing is unusual (I talk…;-), but if you like the song and the rendition, don’t worry…;-) —  DR

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"David Ruether" <r…@no-junk.cornell.edu> wrote in message

news:RczMb.9065$Qq.7138@nwrdny01.gnilink.net… > This may not be it, but look up "cataplexy" (not "catalepsy") on > Google, and see if it fits well enough…

No, I don’t think that’s it. Seems to be a narcolepsy/muscle related thing, which I’m sure I don’t have. With regards to the clock thing, physically everything works just fine, but it’s like you’re in a daze and while you understand the numbers perfectly well, they don’t make sense.

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On Mon, 12 Jan 2004 06:43:27 GMT, Sleepyman wrote: >On Mon, 12 Jan 2004 03:18:56 +0100, "Magnus Kleming" wrote: >>And a second question. My roommate started singing in his sleep a while ago. >>I think it was Amazig Grace or something similar. Is this normal? >Definately not normal. Most sing "The Battle Hymn of the Republic"

Except for the subset that sings "Onward Christian Soldiers."

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On Tue, 13 Jan 2004 03:11:40 GMT, Charles Perrin <c.l.perrinANTIS…@att.net> wrote: >On Mon, 12 Jan 2004 06:43:27 GMT, Sleepyman wrote: >>On Mon, 12 Jan 2004 03:18:56 +0100, "Magnus Kleming" wrote: >>>And a second question. My roommate started singing in his sleep a while ago. >>>I think it was Amazig Grace or something similar. Is this normal? >>Definately not normal. Most sing "The Battle Hymn of the Republic" >Except for the subset that sings "Onward Christian Soldiers."

Right you are, can’t forget those Christian Fundamentalists! Sleepy ———————————————– Let’s Kick the Right Wing, Out of the West Wing ———————————————–

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> Singing is unusual (I talk…;-), but if you like the song and the > rendition, don’t worry…;-) > — >  DR

If the singing is way off key, who pays for remedial singing lessons?

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Uh, that should have been "cataplexy-myoclonus" – rolling between being totally limp (but awake) and jittering all over (great fun…;-) —  DR – Hide quoted text — Show quoted text -"David Ruether" <r…@no-junk.cornell.edu> wrote in message news:OJXIb.8209$x34.1331@nwrdny02.gnilink.net… > I may be alone in this, and my pressure is low, but I like my > humidifier without heat (it is designed to force the air over a long > water passage, so it adds some humidity without heat). With > a good fit of the mask (and my mouth closed…;-), this works > well for me (at a pressure of "6"), though with higher pressures, > poor mask sealing, or open mouth, drying may be more of > a problem (I live in the winter-north, with the room temperature > around 68-72, and humidity well under 30%). I find the CPAP > keeps my air passages free of the usual "glop" and "post nasal > gush", so I’m happy with it. Now, if only I could wake up…;-) > (It’s been a rough few hours with "catalepsy-myoclonus", and > I’m getting going by writing this…;-) > — >  David Ruether >  r…@cornell.edu >  http://www.ferrario.com/ruether

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"jkhart" <jkh…@iolfl.com> wrote in message news:eddf325b.0401010500.3300f813@posting.google.com… > HAPPY NEW YEAR! > Victor Radin <vradinNOS…@NOSPAMameritech.net> wrote in message <news:MPG.1a5cc16d9e49a1bb989827@news.chi.sbcglobal.net>…

[...] >  If you don’t have a heated humidifier, > > get one. Beg, borrow, steal it- demand one from your doc. Then drape > > your hose to avoid rainout and a wet face (see the archives for > > rainout). > In addition to blowing off the ramp feature, I had had hated the > heated humidifier when I went for my sleep study.  You are making me > wonder if I should give that another try too. It felt like warm muggy > stuffy air and not like breathing in nice cool fresh air so they > turned off the heat for me.  I have a humidifier but it is not heated. >  I live in Florida and keep my house 77deg +.  Do you think it is > really worth having heated humidifier?  I realize the cold might make > it more worthwhile, but if I didn’t have a cold?

[...] I may be alone in this, and my pressure is low, but I like my humidifier without heat (it is designed to force the air over a long water passage, so it adds some humidity without heat). With a good fit of the mask (and my mouth closed…;-), this works well for me (at a pressure of "6"), though with higher pressures, poor mask sealing, or open mouth, drying may be more of a problem (I live in the winter-north, with the room temperature around 68-72, and humidity well under 30%). I find the CPAP keeps my air passages free of the usual "glop" and "post nasal gush", so I’m happy with it. Now, if only I could wake up…;-) (It’s been a rough few hours with "catalepsy-myoclonus", and I’m getting going by writing this…;-) —  David Ruether  r…@cornell.edu  http://www.ferrario.com/ruether

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HAPPY NEW YEAR! Victor Radin <vradinNOS…@NOSPAMameritech.net> wrote in message <news:MPG.1a5cc16d9e49a1bb989827@news.chi.sbcglobal.net>… > [snip]…  You should have some sort of ramp feature- make sure you use > it. ALWAYS. Mine was set for 10 minutes.

Well it seems obvious now! THe ramp helped a lot.   When I first had tried the ramp feature, I didn’t like it, because if felt like I was not getting any air in so I had ramping off til now. I gave it a good shot last night and there is no obvious cut off of pressure when ramping up like there is at full force and so it really did help me to get to sleep – everytime I woke up I hit the box to ramp again.  That was my best night sleep on this box yet!  I have more mouth breathing than I would have without the cold I think but definitely progress and I can live with the device til Monday when my DME fixes my settings. THANKS for the advice.  If you don’t have a heated humidifier, > get one. Beg, borrow, steal it- demand one from your doc. Then drape > your hose to avoid rainout and a wet face (see the archives for > rainout).

In addition to blowing off the ramp feature, I had had hated the heated humidifier when I went for my sleep study.  You are making me wonder if I should give that another try too. It felt like warm muggy stuffy air and not like breathing in nice cool fresh air so they turned off the heat for me.  I have a humidifier but it is not heated.  I live in Florida and keep my house 77deg +.  Do you think it is really worth having heated humidifier?  I realize the cold might make it more worthwhile, but if I didn’t have a cold? Vic, your input has really helped me and I appreciate your posting. -jenny

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> I started with a cpap device but was puffing and it wasn’t working so > my doctor (who is terrific by the way) put me on a bipap device – I > have had it less than a week and, unlike the cpap which I really > didn’t mind -this device has been horrible so far.   When I try to > take a nice deep breath, the pressure cuts off.  I have to really work > to ‘breathe past it’.  Once I am asleep, that doesn’t bother me, but I > have a very hard time getting to sleep with it.

try to be as relaxed as you can before you turn on the machine ready to go to sleep.  After you get into bed, make sure the machine is set up ready to go, then relax before putting the mask on…… being relaxed will help you breathe more naturally which i think (though i have no first hand experience with bi-pap) will help. There are also some other general useful hints & tips you may find helpful at http://talhost.net/sleep/cpap.htm — Beth in Australia (I am not a medical professional and anything stated in my posts is my opinion only unless specified otherwise) =================== FAQ for alt.support.sleep-disorder can be found here http://talhost.net/sleep Newsgroup Archives http://talhost.net/sleep/archives.htm this site is a work in progress – feel free to submit info/articles Remove my name to reply

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In article <eddf325b.0312310850.5c8b6…@posting.google.com>, jkh…@iolfl.com says… > This is my first nntp post – Desparation has driven me to it and I am > thrilled to have found this group.  I have enjoyed reading the posts > and it has given me hope and alleviated much of my discouragement with > the difficulties in getting used to these devices.

<<snip BiPAP tales of woe>> > I think once I get to sleep, that I will sleep better with this gear > but it is so hard go get to sleep!  Thanks to anybody who can post any > help and thanks for the hope your threads are providing!  :-)

Can’t help with the reprogramming, I used a different machine until I got the trach. A couple of things that helped me when I started on BiPAP…  You should have some sort of ramp feature- make sure you use it. ALWAYS. Mine was set for 10 minutes. That gave me sufficient time to fall asleep without the high pressure air forced into my lungs. Heated humidifier, and hose management. If you don’t have a heated humidifier, get one. Beg, borrow, steal it- demand one from your doc. Then drape your hose to avoid rainout and a wet face (see the archives for rainout). While using the BiPAP, whenever I was feeling congested, I’d put a dab of vick’s vapo-rub on and just under my nose- where the mask wouldn’t touch it. There’s also a liquid Vick’s to put into a humidifier. I used ONE DROP- ONE SINGLE, LONELY, MINISCULE, NO MORE EVER OR ELSE DROP, in about a pint of distilled water. Worked for me, but be careful about cleaning everything the morning after. Hot wash and HOTTER rinse everything in vinegar solution. Hope this helps, hang in and keep trying… it gets better and easier with time. /Vic

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I can’t tell you how to change anything on your VPAP III- I’m just a couple of weeks into using a VPAP III STA myself. I did have to work with my DME to get the setting right for IPAP and EPAP length and rate of change…it is much more then the titration numbers the sleep lab gives you. My DME spent nearly an hour working on getting my setting right but we also had to work on making sure it was giving me the right breath in timed mode when I forget to breath so it took longer (I have central sleep apnea). Also make sure once your DME figures out the right settings that they document them in your chart. I had a brand new machine…only 12 hours on it…malfunction so I am on my second machine already. I’m still trying out this machine to see if it is the one for me. I am lucky that I have an older style Respironics BiPAP ST/D (less then 30 hours when I got it) for a back up. Its funny that it has much less bells and whistles but it seems to match my breath much better then the VPAP iii ST. With the respironics all there is to set is titration rate (12/7) with backup rate of 6- everything else is automatic. Good luck, Christine

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This is my first nntp post – Desparation has driven me to it and I am thrilled to have found this group.  I have enjoyed reading the posts and it has given me hope and alleviated much of my discouragement with the difficulties in getting used to these devices. I started with a cpap device but was puffing and it wasn’t working so my doctor (who is terrific by the way) put me on a bipap device – I have had it less than a week and, unlike the cpap which I really didn’t mind -this device has been horrible so far.   When I try to take a nice deep breath, the pressure cuts off.  I have to really work to ‘breathe past it’.  Once I am asleep, that doesn’t bother me, but I have a very hard time getting to sleep with it. I have a ResMed VPAP III and know there is an IPAP MAX setting but don’t know how to break in to the thing to program it.  The DMEs are not coming til next Monday and my DR is out for the holidays.  I was irked that they would not walk through the setting on the phone (how hard can it be?) I tried all the button combinations when powering on like one of the post mentions and while I found efficiency data, I did not find a programming menu.  Can anybody give me any hints on how to change my IPAP MAX setting to the full 3 seconds? Secondly, I am reading with surprise that the CPAP/BIPAPS help when you all have colds – You all talk about ‘blowing’ the cold away.  I am afraid it will push all that gunk up in to my sinuses or chest.  I wore it when the cold was coming on and woke up with such an intense headache I hesitate to use it again.  When my nose is stopped, I found myself holding my breathe alot with the bipap.  How do you use a bipap when you nose is just totally all stopped up?  (Part of my difficulty is that I am limited in cold medicines due to hypothyroidism). I think once I get to sleep, that I will sleep better with this gear but it is so hard go get to sleep!  Thanks to anybody who can post any help and thanks for the hope your threads are providing!  :-)

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"PatC" <p…@comcen.com.au> wrote in message news:3fe1a3f3$1@nexus.comcen.com.au…

[....] You may want to look up "cataplexy" – it can combine hallucinations with sleep-paralysis…  DR

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dreams can mean diffrent things but also we got to realize that we control our dreams.anything is possible in a dream.sometimes a dream is a representation of something in real life.but remember only a dream. kirk – Hide quoted text — Show quoted text -PatC wrote: >Hi >If any one can help I would be very grateful! >I have occasionally had a dream that I am being sexually assaulted. >It involves being penetrated by I think a male? I am usually >sexually >aroused by this. >But at the same time I am really angry, I can’t explain why I have >these >feelings. > but it gets worse…… >I try to wake up but my eyelids seem to be ?possessed? I can’t think >of any >other way to describe it… I am aware that I am dreaming but when I >try to >awake my eyelids refuse to complete the task.. ie I start to open my >eyes >but am fighting for control of them.. sometimes I can finally open my >eyes & >then the dream? goes away. If  I cannot manage to do it I go back to >the >same dream, & I start all over again. >The physical part of my dream is still there after I am awake, I can >actually feel the other person?in me. >Ie This morning I had a dream that I was being caressed all over by >something.. it didn’t seem to be a man, althoungh I perceived it as a >man. >He was arousing me, he had encircled my shoulders & had two fingers >in my >mouth,when I tried to wake up I could actually see my bedroom >ceiling, & I >actually felt his strong fingers in my mouth.. they were hard & >strong. I >perceived that I tried to fight with him? But after a few minutes I >was able >to finally stop my eyelids from closing & got out of bed. I felt >really >threatened by something? >I have had similar dreams were I was being penetrated vaginally, by >what >seemed to be a ? demon? I don’t know! >It was a physical sensation not a dream as we normally think of a >dream. >Currently unable to go to bed!! >I have been having this stupidity for some time, but thought they had >gone >away, as it must have more than a year  since the last one. >Thanks >Pat

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- Hide quoted text — Show quoted text -PatC wrote: > Hi > If any one can help I would be very grateful! > I have occasionally had a dream that I am being sexually assaulted. > It involves being penetrated by I think a male? I am usually sexually > aroused by this. > But at the same time I am really angry, I can’t explain why I have these > feelings. >  but it gets worse…… > I try to wake up but my eyelids seem to be ?possessed? I can’t think of any > other way to describe it… I am aware that I am dreaming but when I try to > awake my eyelids refuse to complete the task.. ie I start to open my eyes > but am fighting for control of them.. sometimes I can finally open my eyes & > then the dream? goes away. If  I cannot manage to do it I go back to the > same dream, & I start all over again. > The physical part of my dream is still there after I am awake, I can > actually feel the other person?in me. > Ie This morning I had a dream that I was being caressed all over by > something.. it didn’t seem to be a man, althoungh I perceived it as a man. > He was arousing me, he had encircled my shoulders & had two fingers in my > mouth,when I tried to wake up I could actually see my bedroom ceiling, & I > actually felt his strong fingers in my mouth.. they were hard & strong. I > perceived that I tried to fight with him? But after a few minutes I was able > to finally stop my eyelids from closing & got out of bed. I felt really > threatened by something? > I have had similar dreams were I was being penetrated vaginally, by what > seemed to be a ? demon? I don’t know! > It was a physical sensation not a dream as we normally think of a dream. > Currently unable to go to bed!! > I have been having this stupidity for some time, but thought they had gone > away, as it must have more than a year  since the last one. > Thanks > Pat

  Ah ha! A classic description of an encounter with an Incubus. maybe you require the help of somone practised in the arts of fighting demons.    <Kidding>  !! Actually, you probably chose the correct interpretation in your subject title.  Today’s most common interpretation of experiences during sleep paralysis is some form of "alien abduction" scenerio. However, we’re not that far removed from the days when, instead of aliens, an experiencer might interpret what happened in terms of devils, demons, ghosts or angels. Another form of interpretation, today, uses some form(s) of occult phenomena. In a Spiritul Alcheny e-group I gave up talking about the phenomena of sleep paralysis because there were so many who simply refused to accept the possibility that what they saw as a "mystical" experience might be a simple physyological process being interpreted by a mind of questionable astuteness.  <sigh> The real question may be why you have given the phenomena that particular interpretation? Such an interpretation shouldn’t be viewed as a "problem," by the way, ("rape fantasies" are neither unusual nor pathologic) but its examination might offer worthwhile personal insight. — michael No matter how cynical I get, I’m unable to keep up.  :^>

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- Hide quoted text — Show quoted text -On Thu, 18 Dec 2003 23:32:22 +1100, "PatC" <p…@comcen.com.au> wrote: >Hi >If any one can help I would be very grateful! >I have occasionally had a dream that I am being sexually assaulted. >It involves being penetrated by I think a male? I am usually sexually >aroused by this. >But at the same time I am really angry, I can’t explain why I have these >feelings. > but it gets worse…… >I try to wake up but my eyelids seem to be ?possessed? I can’t think of any >other way to describe it… I am aware that I am dreaming but when I try to >awake my eyelids refuse to complete the task.. ie I start to open my eyes >but am fighting for control of them.. sometimes I can finally open my eyes & >then the dream? goes away. If  I cannot manage to do it I go back to the >same dream, & I start all over again. >The physical part of my dream is still there after I am awake, I can >actually feel the other person?in me. >Ie This morning I had a dream that I was being caressed all over by >something.. it didn’t seem to be a man, althoungh I perceived it as a man. >He was arousing me, he had encircled my shoulders & had two fingers in my >mouth,when I tried to wake up I could actually see my bedroom ceiling, & I >actually felt his strong fingers in my mouth.. they were hard & strong. I >perceived that I tried to fight with him? But after a few minutes I was able >to finally stop my eyelids from closing & got out of bed. I felt really >threatened by something? >I have had similar dreams were I was being penetrated vaginally, by what >seemed to be a ? demon? I don’t know! >It was a physical sensation not a dream as we normally think of a dream. >Currently unable to go to bed!! >I have been having this stupidity for some time, but thought they had gone >away, as it must have more than a year  since the last one. >Thanks >Pat

I agree with Gary. You should make an appointment with a psychologist. Before making an appointment, however, make sure the psychologist understands that you are asking for dream interpretation counseling. Not all psychologists perform dream interpretation. Primarily, it will be followers of the Jungian theory of counseling or maybe the Freud theory, but probably not as likely. Mostly likely, you will find someone who uses the best parts of both theories. Carl Jung and those who follow his theory of counseling are very into dream interpretation. Of course, Freud was one of the first well known psychologists to interpret dreams. But he has very narrow rules for interpretation. Carl Jung was a student of the Freud theory of counseling but took it a step further to look at universal thoughts that all people carry in their subconscious. In other words, Freud looks at your individual dream and interprets it based on what he knows of you as a person. Jung looks more at universal symbolism that all people share in their subconscious dreams. You will probably find most psychologists who interpret dreams will use the best from both theories. Here is an interesting web site that will a very brief over-view of psychological dream interpretation. http://www.rider.edu/~suler/dreamman.html I hope this helps you seek out the assistance you appear to be asking about. — Kiyoshi – The reverse side also has a reverse side

Response:

Please go to a sleep doctor and get a referral to a psychologist that handles sleep stuff.  I wish you the best. "PatC" <p…@comcen.com.au> wrote in message

news:3fe1a3f3$1@nexus.comcen.com.au… – Hide quoted text — Show quoted text -> Hi > If any one can help I would be very grateful! > I have occasionally had a dream that I am being sexually assaulted. > It involves being penetrated by I think a male? I am usually sexually > aroused by this. > But at the same time I am really angry, I can’t explain why I have these > feelings. >  but it gets worse…… > I try to wake up but my eyelids seem to be ?possessed? I can’t think of any > other way to describe it… I am aware that I am dreaming but when I try to > awake my eyelids refuse to complete the task.. ie I start to open my eyes > but am fighting for control of them.. sometimes I can finally open my eyes & > then the dream? goes away. If  I cannot manage to do it I go back to the > same dream, & I start all over again. > The physical part of my dream is still there after I am awake, I can > actually feel the other person?in me. > Ie This morning I had a dream that I was being caressed all over by > something.. it didn’t seem to be a man, althoungh I perceived it as a man. > He was arousing me, he had encircled my shoulders & had two fingers in my > mouth,when I tried to wake up I could actually see my bedroom ceiling, & I > actually felt his strong fingers in my mouth.. they were hard & strong. I > perceived that I tried to fight with him? But after a few minutes I was able > to finally stop my eyelids from closing & got out of bed. I felt really > threatened by something? > I have had similar dreams were I was being penetrated vaginally, by what > seemed to be a ? demon? I don’t know! > It was a physical sensation not a dream as we normally think of a dream. > Currently unable to go to bed!! > I have been having this stupidity for some time, but thought they had gone > away, as it must have more than a year  since the last one. > Thanks > Pat

Response:

Hi If any one can help I would be very grateful! I have occasionally had a dream that I am being sexually assaulted. It involves being penetrated by I think a male? I am usually sexually aroused by this. But at the same time I am really angry, I can’t explain why I have these feelings.  but it gets worse…… I try to wake up but my eyelids seem to be ?possessed? I can’t think of any other way to describe it… I am aware that I am dreaming but when I try to awake my eyelids refuse to complete the task.. ie I start to open my eyes but am fighting for control of them.. sometimes I can finally open my eyes & then the dream? goes away. If  I cannot manage to do it I go back to the same dream, & I start all over again. The physical part of my dream is still there after I am awake, I can actually feel the other person?in me. Ie This morning I had a dream that I was being caressed all over by something.. it didn’t seem to be a man, althoungh I perceived it as a man. He was arousing me, he had encircled my shoulders & had two fingers in my mouth,when I tried to wake up I could actually see my bedroom ceiling, & I actually felt his strong fingers in my mouth.. they were hard & strong. I perceived that I tried to fight with him? But after a few minutes I was able to finally stop my eyelids from closing & got out of bed. I felt really threatened by something? I have had similar dreams were I was being penetrated vaginally, by what seemed to be a ? demon? I don’t know! It was a physical sensation not a dream as we normally think of a dream. Currently unable to go to bed!! I have been having this stupidity for some time, but thought they had gone away, as it must have more than a year  since the last one. Thanks Pat

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On Thu, 04 Dec 2003 18:19:36 -0800, nos…@nospam.com wrote: >www.xyrem.info  on the drug company site.. sounds like horrible stuff.

Not an innocuous drug by any means.

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Mike, I have a similar problem and also take 1.5 mg Klonopin per night. I recently added Remeron (I had tried Neurontin), and the Remeron has been beneficial. John – Hide quoted text — Show quoted text -Michael L <> wrote in message <news:8fuusvsaqu1d74tp5goj593k9qejlnt3st@4ax.com>… > My recent sleep study showed zero minutes in Stage 3 and Stage 4 > sleep. I already take Klonopin [.5 to 1 mg daily] as well a Neurontin > [900 mg daily] so the last think my doc wants to do is add another > drink to the cocktail. > He recommends some aerobic exercise. And if I can find the energy I’ll > use that treadmill I have. > Are there any things that have been reported to bring about entry into > those deeper levels? I know that many knock homeopathy but I am > willing to look at anything. > Thanks in advance, > Mike (age 49)

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- Hide quoted text — Show quoted text -nos…@nospam.com wrote: >>On Thu, 04 Dec 2003 13:19:20 -0500, Michael L <> wrote: >>>My recent sleep study showed zero minutes in Stage 3 and Stage 4 >>>sleep. I already take Klonopin [.5 to 1 mg daily] as well a Neurontin >>>[900 mg daily] so the last think my doc wants to do is add another >>>drink to the cocktail. >>>He recommends some aerobic exercise. And if I can find the energy I’ll >>>use that treadmill I have. >>>Are there any things that have been reported to bring about entry into >>>those deeper levels? I know that many knock homeopathy but I am >>>willing to look at anything. >>Xyrem. >>www.xyrem.info >>Although it’s only approved for cataplexy associated with narcolepsy, >>it is supposed to put you into stages 3 and 4 sleep within minutes of >>taking it. >>I too rarely get into deep sleep stages, and I’m now awaiting my >>approval to go on it. >  Even at recommended doses, the use of Xyrem has been associated with confusion, depression, > neuropsychiatric events, and respiratory depression.

Got any links/references?  Although I have no need for any kind of drug for sleep, someone is bound to ask.  This way you’ll have a little more time. <VBG> – Hide quoted text — Show quoted text –

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>My recent sleep study showed zero minutes in Stage 3 and Stage 4 >sleep. I already take Klonopin [.5 to 1 mg daily] as well a Neurontin >[900 mg daily] so the last think my doc wants to do is add another >drink to the cocktail.

At your age, I’m not so sure this is overly abnormal, although "zero" is a bit much. Was there anything questionable about the study’s findings? Any unexplained arousals?

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My recent sleep study showed zero minutes in Stage 3 and Stage 4 sleep. I already take Klonopin [.5 to 1 mg daily] as well a Neurontin [900 mg daily] so the last think my doc wants to do is add another drink to the cocktail. He recommends some aerobic exercise. And if I can find the energy I’ll use that treadmill I have. Are there any things that have been reported to bring about entry into those deeper levels? I know that many knock homeopathy but I am willing to look at anything. Thanks in advance, Mike (age 49)

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Hi all, new to the group. I’ve got a question about dreams, and if what I’ve been experiencing is at all common with narcolepsy and/or apnea. First of all, I used to be one of those people that never remembered thier dreams at all. Now, since all my sleep problems started (last May), not only do I remember them when I wake up, I’m often aware of the fact that I’m dreaming while it’s happening, and can often take control (lucid dreaming). Also, I can actually feel stuff when I’m in that 1/2 asleep-1/2 awake stage (almost like tactile hallucinations. I also have auditory and visual hallucinations when I’m on the border of sleep/waking.) Also, I’ve been having a wierd "event" happen while sleeping. I will dream that I "wake up" and in the dream I will get out of bed and begin my morning routine. Then I will "wake up" again, and realize I had been dreaming about it, I’ll begin my morning routine, and then, I’ll "wake up" againe. I’m sure you can see they cycle I’m getting at here.. I keep dreaming about waking up, and each time, I’m convinced that this time I’m really awake. I’ve gone through probably a dozen or more of these cycles before I do actually wake up for real. Since this is my first post on this group, I’ll share a bit of background for anyone interested. Prior to my problems, I was a truck driver, worked nights and hauled gasoline. Last May I began feeling pretty tired, and I’d often get light headed. Finally one night I could not stay awake for anything. I almost ran a car off the road, and at that point finally decided it’d be better to just park the truck, regardless of what my boss would say. The next day I went to my GP, and he diagnosed me as having insomnia (was only able to sleep hour and a half to 2 hours at a time mostly), and gave me Trazodone (which didn’t work) and then Ambien (which also didn’t work). One day while over at my father’s house, I had a "seizure." Reported that to my GP, and he referred me to a neurologist. A couple of months (and thousands of dollars worth of tests, including 1 sleep study that showed no apnea and "normal" daytime sleep) later that neurologist referred me to a 2nd one. 2 more sleep studies later, and still no diagnosis (other then Apnea, which I think is more of a result of weight gain after not being able to do anything for so long).)   My latest sleep study did not show any REM periods during the MSLT, but the results were still quite abnormal.  During the night I had slept (with mask) at an efficiency of about 86%, with no apnea events or drop in pulse-ox. However, even though I had slept well the night before, I averaged less then 30 seconds to fall asleep during the MSLT. Doctor still wasn’t sure what was going on, diagnosed me as "idiopathic hypersomnia" and referred me to a 3rd neurologist. He also gave me a script for 200mg Provigil to try while waiting for next appt. Well, I finally got to that appointment with the 3rd neurologist. He said he thought it was (forget name) which was very similiar to narcolepsy, but without some of the  additional effects, such as cataplexy. When I mentioned I did have cataplexy, he looked rather surprised, and asked me to describe what happened (apparently the 2nd neurologist never even bothered noting it on my charts, even though I tried to talk to him about it multiple times) My father also happened to be in the office (since I can’t drive) and he described what happened when I had an "attack".  So, now my diagnosis has been changed to "probable narcolepsy" plus apnea.  He upped my Provigil dosage to 400mg, but even though it has helped some, it’s still not to the point where I can finally get a job. So now it looks like when I call in next week to check in with the nurse, I’ll be getting a script for Ritalin.

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I,m new   I can,tsleep.I suffer from post tramtic stress disorder. Do to many health issues.I,m loanely my name julie

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> I’ve got a question about dreams, and if what I’ve been experiencing is at > all common with narcolepsy and/or apnea.

if you have a form of narcolepsy, that would explain the dreaming issues you mentioned, one of the major aspects of narcolepsy is disordered REM sleep, sometimes REM seems to occur when someone is basically awake, at the beginning and/or end of the sleep cycle. > GP, and he referred me to a neurologist. A couple of months (and thousands > of dollars worth of tests, including 1 sleep study that showed no apnea

and -SNIP- > for so long).)   My latest sleep study did not show any REM periods during > the MSLT, but the results were still quite abnormal.  During the night I had > slept (with mask) at an efficiency of about 86%, with no apnea events or > drop in pulse-ox. However, even though I had slept well the night before,

I I suspect that you may have had apnea all along, but the first study didn’t pick it up – it seems that for some of us, sleep studies aren’t a definate way of determining whether or not we have apnea (although it may be rare for a sleep study not to pick it up on one occassion but to do so on another). I have had three sleep studies, 2 showed apnea, but the most recent one didn’t, I know I still have apnea though, despite what the most recent study showed. If you do have some form of atypical (is that the word?) narcolepsy, then you should find that the medication helps Please let us know how you go. Also, if you’re having any probs adjusting to CPAP – let us know and we’ll do what we can to help you through it….. try and be specific about any problems you’re having as it helps us know better how we might help. — 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

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Hi Ali & sarah it would be great if you……and anyone else for that matter….. could write  a short testimony about your experience wtih narcolepsy for the newsgroup website.  Just write about what you went through before/after diagnosis..perhaps what you do to treat it. You can email to me at ta…@tpg.com.au (dont’ hit reply to this message because i dont’ often check the email addy i use for this.) — 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 "Ali Jane" <loc…@hotmail.com> wrote in message

news:xOEP9.112114$F2h1.40312@news01.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> Doctors can be so frustrating!!! Why do they not take us seriously when we > know there’s something wrong? My doctor ran every blood test he could think > of after I had bugged him about my sleepiness for a couple of years. He did > a sleep test, at a lab which, in my opinion, was poorly run and didn’t > follow up on me afterward. He never even offered to send me to a specialist! > It’s not as if he loses anything by giving me a referral. Once I get things > sorted out, I’m switching family doctors. > > the worst part was teachers were always saying that i needed more sleep > etc. > > i had teachers calling me ’sleepy’ and making comments about me, i had > kids > > laughing at me because i couldn’t laugh, i’d just collapse or bang my head > > against the desk (cataplexy), then as my grades started to drop i had my > mom > > screaming and yelling at me all the time. > That’s terrible! I was lucky, I never had cataplexy, I was just constantly > sleepy. My teachers would tell my parents I’m a great student but I sould > participate more. Frankly, it was too difficult to stay awake in class, let > alone give any input. At the end of high school, as pressure to perform > increased, I had a breakdown. I freaked out at a teacher and ended up in > Guidance, and they sent me home for 3 days. I spent those three days in bed, > and my dad was not pleased with it (he was angry at me, actually). > I did end up graduating and narrowly missed the honour roll (I had a 79.1 > average), and took a job at a hair salon. Of course, I couldn’t handle that > but nobody would listen there, either. After two months my boss and I agreed > I couldn’t handle the job, and my parents finally took the hint that there > was something very wrong. They gave me time to figure myself out, and for a > year and a half I babysat half days, which worked quite well. I was still > sleepy, but I was able to nap before work and then the kids kept me busy > enough to stay awake. > It’s definitely not easy to work with this, and a lot of people are simply > not willing to hear you out about your condition. Hopefully you have some > support from lose friends and family who can help you through all this. > > now that i > > have been officially diagnosed i make a point of telling people about > > narcolepsy.  i really get a kick out of the looks/reactions when they ask > if > > it will ever go away of if i’ll ‘grow out of it’… > Isn’t that phrase obnoxious? I was actually considering getting a Medic > Alert bracelet that says i have narcolepsy. For some reason, it appears > (somebody prove or disprove this theory if you can) that if you just tell > someone about your condition, they brush it off as an exaggeration or > excuse, but if you have a bracelet people take it more seriously because it > must be serious for you to note it somewhere! People wear the bracelets for > heart conditions, severe allergies, diabetes, and so on. It would make sense > to me that narcolepsy (especially cataplexy) would be a suitable thing for a > bracelet, too. > I recently read a suggestion that cataplectics carry a card in their wallets > stating the condition, a brief description, and what people should do if it > occurs. As scary as it must be for the person who has the attacks, I imagine > a lot of people who have no idea what’s happening would really panic if they > saw someone collapsed and unable to speak. > I’m getting off topic now and rambling, so I’ll sign off now and await > comments from others. – Ali

Response:

Doctors can be so frustrating!!! Why do they not take us seriously when we know there’s something wrong? My doctor ran every blood test he could think of after I had bugged him about my sleepiness for a couple of years. He did a sleep test, at a lab which, in my opinion, was poorly run and didn’t follow up on me afterward. He never even offered to send me to a specialist! It’s not as if he loses anything by giving me a referral. Once I get things sorted out, I’m switching family doctors. > the worst part was teachers were always saying that i needed more sleep etc. > i had teachers calling me ’sleepy’ and making comments about me, i had kids > laughing at me because i couldn’t laugh, i’d just collapse or bang my head > against the desk (cataplexy), then as my grades started to drop i had my mom > screaming and yelling at me all the time.

That’s terrible! I was lucky, I never had cataplexy, I was just constantly sleepy. My teachers would tell my parents I’m a great student but I sould participate more. Frankly, it was too difficult to stay awake in class, let alone give any input. At the end of high school, as pressure to perform increased, I had a breakdown. I freaked out at a teacher and ended up in Guidance, and they sent me home for 3 days. I spent those three days in bed, and my dad was not pleased with it (he was angry at me, actually). I did end up graduating and narrowly missed the honour roll (I had a 79.1 average), and took a job at a hair salon. Of course, I couldn’t handle that but nobody would listen there, either. After two months my boss and I agreed I couldn’t handle the job, and my parents finally took the hint that there was something very wrong. They gave me time to figure myself out, and for a year and a half I babysat half days, which worked quite well. I was still sleepy, but I was able to nap before work and then the kids kept me busy enough to stay awake. It’s definitely not easy to work with this, and a lot of people are simply not willing to hear you out about your condition. Hopefully you have some support from lose friends and family who can help you through all this. > now that i > have been officially diagnosed i make a point of telling people about > narcolepsy.  i really get a kick out of the looks/reactions when they ask if > it will ever go away of if i’ll ‘grow out of it’…

Isn’t that phrase obnoxious? I was actually considering getting a Medic Alert bracelet that says i have narcolepsy. For some reason, it appears (somebody prove or disprove this theory if you can) that if you just tell someone about your condition, they brush it off as an exaggeration or excuse, but if you have a bracelet people take it more seriously because it must be serious for you to note it somewhere! People wear the bracelets for heart conditions, severe allergies, diabetes, and so on. It would make sense to me that narcolepsy (especially cataplexy) would be a suitable thing for a bracelet, too. I recently read a suggestion that cataplectics carry a card in their wallets stating the condition, a brief description, and what people should do if it occurs. As scary as it must be for the person who has the attacks, I imagine a lot of people who have no idea what’s happening would really panic if they saw someone collapsed and unable to speak. I’m getting off topic now and rambling, so I’ll sign off now and await comments from others. – Ali

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ill be 19 in april.  my family doc kept saying i was overexaggerating, and that it was just normal teenage hormones etc. that i wanted (and was!) sleeping all the time.  somehow i didn’t think that falling asleep while driving and going from being an above average student then dropping to failing was normal. the worst part was teachers were always saying that i needed more sleep etc. i had teachers calling me ’sleepy’ and making comments about me, i had kids laughing at me because i couldn’t laugh, i’d just collapse or bang my head against the desk (cataplexy), then as my grades started to drop i had my mom screaming and yelling at me all the time. i really believe that teachers should be aware, and also learn ‘not to judge a book by it’s cover’.  the student may have deeper issues such as problems at home etc. that are causing them to do/act poorly in school. now that i have been officially diagnosed i make a point of telling people about narcolepsy.  i really get a kick out of the looks/reactions when they ask if it will ever go away of if i’ll ‘grow out of it’… sara :0) ***************** – Hide quoted text — Show quoted text -> > smart idea to look for answers on your own. if i didn’t do my own research > > and insisted to my family doc that this wasn’t normal ‘teenage hormones’ i > > wouldn’t be where i am today! > May I ask how old you are? I was never told that my problem was teenage > hormones, I was told that I stay up too late and party too much and that’s > why I was tired in school. If only they knew the truth! I think once I get > my diagnosis I’m going to have to go back to my school and visit with some > of the teachers I was close with and tell them what the doctor said. I think > teachers should be taught a little about sleep disorders as they are the > ones who see good kids falling asleep in class regularly. If teachers had > any idea about this, it could go a long way in helping diagnose those of us > who are struggling just to graduate, even though we are obviously > intelligent human beings. – Ali

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> im sure macfarlane is one of the best as he works at the same clinic where i > go to see dr. harvey moldofsky who has been the greatest in making sure i > get on the right track.

Yes, Moldofsky and MacFarlane work together. I gather this is the best sleep lab in the country. So far I really like Dr. MacFarlane, and everyone I speak to says he’s wonderful. I’m really lucky I found his e-mail address when poking around the web for information! My own doctor was pretty useless, and it was only after my boss first threatened my job 6 weeks ago that I took matters into my own hands and started searching the web for information. > smart idea to look for answers on your own. if i didn’t do my own research > and insisted to my family doc that this wasn’t normal ‘teenage hormones’ i > wouldn’t be where i am today!

May I ask how old you are? I was never told that my problem was teenage hormones, I was told that I stay up too late and party too much and that’s why I was tired in school. If only they knew the truth! I think once I get my diagnosis I’m going to have to go back to my school and visit with some of the teachers I was close with and tell them what the doctor said. I think teachers should be taught a little about sleep disorders as they are the ones who see good kids falling asleep in class regularly. If teachers had any idea about this, it could go a long way in helping diagnose those of us who are struggling just to graduate, even though we are obviously intelligent human beings. – Ali

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im sure macfarlane is one of the best as he works at the same clinic where i go to see dr. harvey moldofsky who has been the greatest in making sure i get on the right track. smart idea to look for answers on your own. if i didn’t do my own research and insisted to my family doc that this wasn’t normal ‘teenage hormones’ i wouldn’t be where i am today! i haven’t had a chance to look through the stuff here, but it provides a large listing of canadian sleep links etc. http://www.silentpartners.org/sleep/links/index.htm "Ali Jane" <loc…@hotmail.com> wrote in message

news:3IjP9.77050$E_.47955@news02.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> James MacFarlane at University of Toronto. I will be asking him more > questions when I see him, but in the meantime I’m the kind of person who > likes to look for answers on my own.

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James MacFarlane at University of Toronto. I will be asking him more questions when I see him, but in the meantime I’m the kind of person who likes to look for answers on my own.

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just curious- who’s your doc? "Ali Jane" <loc…@hotmail.com> wrote in message

news:Nf0P9.70855$yW.67142@news04.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> Thank you for your responses! My mother phoned me this morning about an > article she found in a seniors’ newspaper. There is a support group in North > York, which used to be part of the Sleep/Wake Disorders Society of Canada. > It now operates independantly and meets the second Monday of every month. I > just phones and spoke to the woman who runs it, and am very excited to know > I will be going to a meeting in the near future. She has also said that my > doctor is one of the best and is very well-liked by his patients. > Anyone who is interested in this support group for all sleep disorders can > call 416-225-1694. (I have been given permission to post this phone number > on the newsgroups. > > Does your employer have any kind of short term disability plan? > > If so, use it. > I work for a small company with 5 employees, so there is no big corporate > policy to protect me. Right now my employers have decided to hold off firing > me until I begin treatment so they can see if things improve. I’ll keep you > posted! – Ali

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- Hide quoted text — Show quoted text -Ali Jane wrote: > Hello, > I am about to be tested for narcolepsy, and the doctor is pretty sure I have > it. I have had the symptoms my entire life but only recently was I able to > contact a sleep specialist to have this investigated. > I have yet to meet another narcoleptic in person. I am seeking a support > group in the Toronto area. I would very much like to speak with someone in > person who has gone through the things I am going through right now. At 24, > I am about to lose my job because I can no longer stay awake at work. I > would like to know about disability pensions and laws regarding this type of > disability, laws specific to people who live in Ontario. > I found a phone number for a support group for sleep disorders in a local > paper, but after leaving a message I have not had any response from them. > The Sleep/Wake Disorders of Canada organisation closed down September 27 > this year, so at the moment I am stranded without support for my specific > situation. > If there are any Canadians on the list who could help me out, I would > appreciate it. I have had many offers of advice from narcoleptics who do not > live in Canada, but as I am seeking information about specific local laws, I > really need somebody who at least lives in Canada, if not Ontario. Thanks > very much, and merry Christmas to everybody! – Ali

I don’t know of any support groups for narcolepsy, but you might call Toronto General and Sunnybrooke and check with them. If other Canadians are interested, the London Health Sciences Centre has a good web site of support groups at the following URL: http://www.lhsc.on.ca/programs/medgenet/a_sup.htm As for benefits, you qualify for sick benefits for three months from UIC and can get temporary disability from the Province of Ontario, or permanent from Canada Pension. Check out the provice’s web site at: http://www.gov.on.ca/ Does your employer have any kind of short term disability plan? If so, use it. The following link may also be usefull as a resource. http://www.talkaboutsleep.com/Info/KLW/SleepApnea1.htm If you find any resource group meeting for narcolepsy, could you post the information here? Narcolepsy is treatable and if your employer is aware of the problem and this fact, maybe you could take a short leave of absence until you are under control. Good luck on your treatment. Regards Lee in Toronto —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–==  Over 80,000 Newsgroups – 16 Different Servers! =—–

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Thank you for your responses! My mother phoned me this morning about an article she found in a seniors’ newspaper. There is a support group in North York, which used to be part of the Sleep/Wake Disorders Society of Canada. It now operates independantly and meets the second Monday of every month. I just phones and spoke to the woman who runs it, and am very excited to know I will be going to a meeting in the near future. She has also said that my doctor is one of the best and is very well-liked by his patients. Anyone who is interested in this support group for all sleep disorders can call 416-225-1694. (I have been given permission to post this phone number on the newsgroups. > Does your employer have any kind of short term disability plan? > If so, use it.

I work for a small company with 5 employees, so there is no big corporate policy to protect me. Right now my employers have decided to hold off firing me until I begin treatment so they can see if things improve. I’ll keep you posted! – Ali

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Hello, I am about to be tested for narcolepsy, and the doctor is pretty sure I have it. I have had the symptoms my entire life but only recently was I able to contact a sleep specialist to have this investigated. I have yet to meet another narcoleptic in person. I am seeking a support group in the Toronto area. I would very much like to speak with someone in person who has gone through the things I am going through right now. At 24, I am about to lose my job because I can no longer stay awake at work. I would like to know about disability pensions and laws regarding this type of disability, laws specific to people who live in Ontario. I found a phone number for a support group for sleep disorders in a local paper, but after leaving a message I have not had any response from them. The Sleep/Wake Disorders of Canada organisation closed down September 27 this year, so at the moment I am stranded without support for my specific situation. If there are any Canadians on the list who could help me out, I would appreciate it. I have had many offers of advice from narcoleptics who do not live in Canada, but as I am seeking information about specific local laws, I really need somebody who at least lives in Canada, if not Ontario. Thanks very much, and merry Christmas to everybody! – Ali

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In article <aRRO9.84625$F2h1.37…@news01.bloor.is.net.cable.rogers.com>, "Ali Jane" <loc…@hotmail.com> wrote: > I have yet to meet another narcoleptic in person. I am seeking a support > group in the Toronto area. I would very much like to speak with someone in > person who has gone through the things I am going through right now. At 24, > I am about to lose my job because I can no longer stay awake at work. I > would like to know about disability pensions and laws regarding this type of > disability, laws specific to people who live in Ontario.

I don’t know of any in Toronto, but a fairly famous science fiction editor (and a great person) has narcolepsy: Teresa Nielsen Hayden. Worst case, she’ll be in Toronto over labor day weekend 2003. She’s also wickedly funny and interesting. http://www.nielsenhayden.com/ Her email address is on her blog, linked from that page. — _Deirdre                                             http://deirdre.net "Ideally pacing should look like the stock market for the year 1999, up and up and up, but with lots of little dips downwards…."                                      – Wen Spencer on plotting a novel

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