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Can Not Wake Up!!!!!


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#1 ten_tenn

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Posted 08 September 2009 - 11:57 AM

I was diagnosed with N about 3 months ago and sleep apnia a month before that. I was told about 8 years ago that I was most likely N and apnia would be an issue in the future .... but I just lived with it until resently. I am quite confused though. EDS has always been a problem, cataplexy is present although I never realized thats what it was until I started reserching it over the past few months, but by far my biggest problem is the inability to wake up in the mornings. I stay busy. I'm a supervisor by day and a tattoo artist by night, but i get 7 - 8 hours of sleep every night. I sleep through alarms. I find myself waking up half dressed, late, and dreaming that I am already at work. After and hour or so at work I have to check the parking lot to see what I drove today. Sleeping late is starting to be a huge problem for my professionally. I wear my CPAP religiously, initially thinking that my mornings are from the apnia ... but if anything its getting worse. I've tried nuvigil twice a day which helped with eds minimally. I'm back on provigil twice a day (which I took years ago), but its not doing much either. At any rate, I don't see how either would help with the morning issues.
So here are my questions:
1) Does anyone else deal with problems waking up?
2) Since Xyrem helps regulate sleep patterns, is it something that might help?

#2 sleepless sleeper

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Posted 08 September 2009 - 04:40 PM

1) I have an extremely difficult time waking up in the mornings. When I used to have a job away from my home, I did similar things to what you mention. I never "dealt" with it. I didn't know that I had N. Alarm clocks never mattered. I was habitually late. I still am late getting out of bed to take care of my kids. My husband has to repeatedly come in to wake me up. A lot of times I think that I'm awake, but before I know it, an hour has passed. Also, I believe that I am aware of what's going on, but I can easily assume that everything is okay and that I have all the time in the world. I can talk myself out of anything and completely believe that everything is fine while in this state.

2) Xyrem helps some people, but I couldn't take it so I can't help you with this one.


I don't have sleep apnea. Well, my doctor says that I scored a "7" and that it was very mild, but we focused on the N because I was not willing to wear a mask if it was such a mild case.

#3 ohiolor

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Posted 08 September 2009 - 05:33 PM

I don't have answers to your questions but I do have a question of my own. You stated that you were told 8 years ago that you might have a problem with apnea and N in the future. I know that there are some "physical" signs of apnea that can be seen.....wide, thick neck...overweight etc but I know of no physical indicators of N. Was this a doctor that told you or someone else?

#4 ten_tenn

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Posted 08 September 2009 - 11:25 PM

Don't misunderstand what I was trying to say. It was a sleep specialist who told me that apnia would most likely be a problem for me later on in life .... but he thought I was most likely N at the time, although the tests along with my symptoms then were not sufficent enough to diagnose it, although he did start initial treatment for EDS. I also failed to mention that I moved to another state about 6 months after that and had a more flexable job. Either my condition has progressively worsened or I'm too stuburn to think otherwise, but I did not seek further treatment until recently.

#5 alyshari

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Posted 09 September 2009 - 11:29 AM

Hi Ten_Tenn,

I also have sleep apnea and N. I was treated for Apnea before I was treated for the N. I have had exactly the same experience. I wear my CPAP religiously every night, yet I feel as if my N has gotten worse. I am working through treatment for the N, but have not been able to overcome my EDS or the sleep drunkiness in the mornings. I feel worse now, then when I didn't have my CPAP. I have come up with a theory as to why this may be. I think when we have untreated apnea, it wakes our brain up when we stop breathing. I think perhaps, it may knock us out of REM, and into the more restful stages of sleep temporarily. With the CPAP, I feel like I am stuck in REM all night. My former sleep Dr had no answer for me as to why I was feeling worse, so he sent me to a sleep psychologist thinking that Cognitive Behavioral therepy would help( the psychologist felt it was absolutely ridiculous that he referred me to him, b/c N is not a behavior issue). Needless to say, I am switching Doctors. I have not tried Xyrem as of yet, but it is supposed to supress the amount of REM at night, so you would stay in the more restful stages of sleep, which helps your N symptoms. Once again, this is only my opinion, but would love some feedback from others as well on their thoughts. I could be way off the mark...

#6 sleepless sleeper

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Posted 09 September 2009 - 11:42 AM

The official stance on N is that it is non-progressive. For some, this is thankfully the case, but there are too many of us that is has been a progressive illness. Possibly the medical community believes that our symptoms that have worsened are not N but other issues. For me, I know that this is not case, and I'm positive that others will state the same.

I hope that you find something that can help you. Hopefully coming to NN will be of great benefit to you. You are welcome here!

#7 sleepless sleeper

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Posted 09 September 2009 - 11:55 AM

Do any of you do this? Wake up remembering or realizing something? I did that this morning with the memory of an awful experience of "waking up" after I had apparently been awake for a long time.

About a year ago I was at my parents' house cleaning up and flew back afterward. My flight was early, and my mother-in-law drove me to the airport. I have a vague recollection of being in her truck. I have a vague recollection of standing in the airport. Both are really just "snapshots." I woke up in the boarding area while having a conversation with several people. Apparently it had been in progress for a while. We boarded the plane and made our connecting flight. I was on the second leg of our journey and PANICKED. I had NO IDEA what I had done with my baggage. I tried so hard to remember what I had done with it. I thought maybe I had left it w/ my mom n law, but no. I had that snapshot of being in the airport, and I had the suitcase with me. A big behemoth of a Samsonite. That was all I could remember no matter how hard I tried. I then was convinced that I left it in the lobby. I was convinced that I would have federal agents waiting for me when I landed in Jackson. I was T-E-R-R-I-F-I-E-D. I was going to jail. I calmed myself saying that automatic behavior usually means that I still do what I'm supposed to. That was my mantra the rest of the flight, and fortunately, auto behavior won. I had checked the bag, and it was on the carousel.

The last time that I went, my husband went also. He drove back and dropped me off in Missouri to fly the rest of the way back. He said that I woke up early in the morning when the wake up call came, got dressed, grabbed my bag, and left without saying goodbye. I remember getting on the shuttle, but again, that was a snapshot. I "woke up" in the terminal walking to my gate. Apparently I can read during auto behavior. Thank the stars!

I have a lot of these. I bet many of us do. You're not alone, ten_tenn.

#8 Nyx

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Posted 09 September 2009 - 02:53 PM

I was diagnosed with N about 3 months ago and sleep apnia a month before that. I was told about 8 years ago that I was most likely N and apnia would be an issue in the future .... but I just lived with it until resently. I am quite confused though. EDS has always been a problem, cataplexy is present although I never realized thats what it was until I started reserching it over the past few months, but by far my biggest problem is the inability to wake up in the mornings. I stay busy. I'm a supervisor by day and a tattoo artist by night, but i get 7 - 8 hours of sleep every night. I sleep through alarms. I find myself waking up half dressed, late, and dreaming that I am already at work. After and hour or so at work I have to check the parking lot to see what I drove today. Sleeping late is starting to be a huge problem for my professionally. I wear my CPAP religiously, initially thinking that my mornings are from the apnia ... but if anything its getting worse. I've tried nuvigil twice a day which helped with eds minimally. I'm back on provigil twice a day (which I took years ago), but its not doing much either. At any rate, I don't see how either would help with the morning issues.
So here are my questions:
1) Does anyone else deal with problems waking up?
2) Since Xyrem helps regulate sleep patterns, is it something that might help?


Ten Tenn: If I understand correctly, you just started seeing a sleep doctor for N and sleep apnea treatment within the last few months. If I were you, I would ask for a follow-up appointment, or leave the doctor a message letting them know that your EDS is getting worse, and that the medications don't seem to be helping. It's true that narcolepsy is not officially considered progressive, but I have a few theories on why you feel things are getting worse, and some things to try:

1) First call your doctor and tell them what's going on so they can check out your CPAP and/or adjust your meds. Perhaps they'll have you increase the provigil or nuvigil dose. Or switch to a stimulant like ritalin or adderall. Or perhaps they'll have you try xyrem. It's a very restricted drug, but it has been known to really help some people with their EDS. It essentially mimics restful sleep (even though it's really drugged sleep), so you feel rested and less tired during the day. Some have reported they don't need any drugs to stay awake during the day if they take zyrem, others say they could cut their meds in half, others have terrible side effects and have to stop taking it, and others don't find it helpful. It's a tricky drug with tricky side effects, but it's worth asking your doctor about. Also, it's supposed to be great for treating cataplexy.;

2) Try to make some changes and see if they help. For example, if 7-8 hours of sleep a night doesn't seem to be enough, get 9 hours. Try to do that for a whole week and see if it helps. And do your best to wake up before you really need to wake up (perhaps 45 minutes or an hour earlier) to take your provigil or nuvigil. That way, by the time your "final" alarm goes off, you may have a better shot at actually getting out of bed and getting to work on time.

3) Check your eating habits. Perhaps try eating smaller meals so you don't get that post-meal lethargy. Some people have found that eating less carbohydrates or gluten helps. Others don't.

4) Try to keep as physically active at work as possible.

5) Use a PDA or a little note pad to jot down things that you feel you might forget. A lot have definite memory issues, and finding ways to cope with that can really help cut down on the frustration and confusion.

6) Maybe cut back on your night job hours if you can. At least for awhile if you need to in order to get more sleep. I guess it comes down to how much of a risk you think it is that you'll lose your day job over sleeping in late and getting to work late. If the night job isn't helping things,.....

7) If you have a lunch break during the day, or have some opportunity to go home for an hour, try taking a nap. Some people find that taking a 30-40 minute nap during the day BEFORE they feel exhausted helps keep the EDS for taking hold - at least for a few hours. Or maybe you can find somewhere to go to rest in private at work? I know it isn't very feasible, but if you can, it could help. Then again, other people don't find a nap helpful at all. So it really just depends on how you respond.

8) Think about your stress level and ways to control it (if possible).  Try to minimize stressful things in your life if you can, and/or find things to do that help you relax.

9) Ask your doctor or consider whether your worsening EDS despite the same level of medications could be a factor of developing a tolerance to the drug, rather than your narcolepsy actually getting worse. I know a lot of people who have found that provigil or nuvigil works great at first, but then they end up needing more and more to get the same effect (i.e., not falling asleep during the day). And I'm not sure how this works (tolerance) with respect to provigil/nuvigil, but people definitely take a "drug holiday" for a day with some of the stimulants for narcolepsy so they don't build up a tolerance. Granted, they're pretty much asleep that whole day they don't take the drugs, but they feel it's worth it if they can stay awake during the week at work. Also, if you do end up increasing your provigil or nuvigil dose, be aware that you could end up with other side effects. I would still try increasing the dose if your doctor suggests it, but just keep an eye on how you respond.

Anyway, those are just some suggestions and food for thought, so to speak. I think your best bet is talking to your doctor. Also, I don't know as much about sleep apnea treatment, but perhaps it could be that your CPAP isn't working right, and you're actually getting less sleep now than before. Did they do an overnight test after fitting you with the CPAP to see how it's working? Do you have anyone in the room with you when you sleep at night who can tell you if you're getting up or how it seems to be working?

Well, good luck. Feel free to post back if you doctor has some good advice!

#9 ten_tenn

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Posted 09 September 2009 - 03:05 PM

Thanks for all your responces. I have searched site after site including NN looking for something close to what I do and have up until now found very little info. It gets frustrating when I tell my sleep doc that waking up is my biggest problem and he sort of looks at me funny as if that shouldn't be a problem at all. Of course everyone else I know (the same for many of you I'm sure) really doesn't understand that there is more to it than being lazy and even though I don't deny a lazy streak I don't know how to explain it to them. In fact the last time I did (a week ago today) I told my boss the truth ... when I woke up I was laying on the bed half dressed thinking I was already at work. I belieive if one of my employees told me that story I would have done just as he did and laugh at the imposibility. Today is the one day of the week that is my absolute worst (we start at 5 on Wed instead of 6). I tried a new approach today, I spent the night at work. Beleave it or not, I was still asleep until after startup.

#10 ten_tenn

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Posted 09 September 2009 - 03:20 PM

In many ways I agree with what allyshari poseted. I see my sleep doc every 2 to 4 weeks until we get these issues sorted out. He has suggested stimulants as the next step. I have had a total of 4 overnight studies in the past 6 months ... 3 of which where we made CPAP adjustments. I can tell that the CPAP settings do work, but the N issues are magnified. It really is like I get better apnia controled sleep, but can't wake up or stay awake to save my life. I have carried the same schedule for over 2 years, so why is it so much a problem after seeking treatment? I have tried a few of the suggestions posted and will try the others. As if dealing with one sleep disorder isn't enough, dealing with 2 that seem to overlap with one affecting the other really sucks.

#11 sleepless sleeper

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Posted 09 September 2009 - 06:34 PM

ten_tenn:

go to: talkaboutsleep.com

On Tuesday nights at 9 or 9:30 pm Eastern Time they have a chat for people with sleep apnea.

On Thursday nights at the same time they have a chat for people with narcolepsy (pwn).

You missed last night's chat, obviously, so I strongly encourage you to go tomorrow night. If you cannot go, then please email Tracy at info@talkaboutsleep.com - if that is not correct, then go to the web site and click on contact us, or whatever similar option is available.

Tracy is the owner of the site. She is a sleep education professional and also has sleep apnea with some narc. symptoms. She knows a lot about CPAP machines and masks. I understand that many times she helps test the products before they are put on the market. She can give you the complete low down. She is an underutilized resource that is willing and WANTS to help everyone.

#12 ten_tenn

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Posted 10 September 2009 - 11:13 AM

ten_tenn:

go to: talkaboutsleep.com

On Tuesday nights at 9 or 9:30 pm Eastern Time they have a chat for people with sleep apnea.

On Thursday nights at the same time they have a chat for people with narcolepsy (pwn).

You missed last night's chat, obviously, so I strongly encourage you to go tomorrow night. If you cannot go, then please email Tracy at info@talkaboutsleep.com - if that is not correct, then go to the web site and click on contact us, or whatever similar option is available.

Tracy is the owner of the site. She is a sleep education professional and also has sleep apnea with some narc. symptoms. She knows a lot about CPAP machines and masks. I understand that many times she helps test the products before they are put on the market. She can give you the complete low down. She is an underutilized resource that is willing and WANTS to help everyone.



Thanks! I'll try to be there!