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A Narcoleptic's Sleep Structure


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#1 Mrs Nightminds

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Posted 03 November 2012 - 03:42 PM

I've been googling and the words are swimming in front of my eyes! Can someone explain it simply?


What happens during a Narcoleptic's night sleep that contributes to their EDS? I keep reading about a lack of SWS (slow wave sleep) and too much (?) REM. Is REM disruptive to overall rest, because it's "active sleep"?

I'm curious because I'm just trying to understand all areas of N and when I was diagnosed (only back in Aug/Sept) my doctor really didn't mention anything about how your night time sleep affects your EDS. He pretty much just talked about treating the EDS. I mentioned to him that I feel like I "wake constantly" but he didn't question it anymore than to ask me why I thought it happened (answer: kids, husband, cat, it's always happened, i don't know?!).

When I go back to him in January I want to know the right questions to ask and some of them I want to be about night time sleep and what can be done to help that side of it. I've started on Valdoxan (only been on it 5 nights so trying not to look for improvement yet) which has shown SOME positive influence on SWS, fwiw. I suppose what's in the back of my mind is if I should/want to ask about Xyrem when I see him in January. I want to try and avoid stimulants during the day and I'm wondering (correct me if I'm wrong, I know I'm not as experienced as a lot of you) if really getting a handle on improving my night time sleep might be enough to take the edge off my EDS without the need for stimulants.


Thanks. And sorry if I posted this in the wrong section. I had a look around and was unsure.

#2 MINItron

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Posted 03 November 2012 - 05:45 PM

I've been googling and the words are swimming in front of my eyes! Can someone explain it simply?


What happens during a Narcoleptic's night sleep that contributes to their EDS? I keep reading about a lack of SWS (slow wave sleep) and too much (?) REM. Is REM disruptive to overall rest, because it's "active sleep"?


There are a couple of things going on. One, Narcoleptics tend to get too much REM, and not enough SWS. This adds to the EDS because even if you sleep for 10 hours you just aren't getting a good night's rest. PWN tend to bounce from light sleep to REM and back so they are easily disturbed while sleeping. This poor quality of sleep leads to a huge sleep debt no matter how much sleep you get. Depending on how bad your narcolepsy is you can have REM intruding into your wakeful state as well. That is where cataplexy, hypnagogic hallucinations and sleep paralysis come from.

Two, PWN to some extent or another have damage to the orexin (hypocretin) center of the hypothalmus in the brain. Orexin helps control wakefulness and appetite. This diminished supply of orexin leads to the blurring of the sleep boundaries during the day when you are trying to stay awake. Improving the quality of sleep for many PWN can erase the sleep debt enough that stimulants are not necessary during the day. Without the weight of the sleep debt hanging over you it becomes easier to hold back the sleep attacks, and other symptoms of N because you are well rested.

I hope that sums it up in a clear way.

#3 Mrs Nightminds

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Posted 04 November 2012 - 02:45 PM

Thankyou. Yes, that's very clear. And helpful!

#4 exanimo

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Posted 09 November 2012 - 09:17 PM

I found this site to be helpful:
http://www.sleepfoun...-when-you-sleep

It outlines what 'normal' sleep looks like and explains what the different stages of sleep do. Normal sleep is generally composed of 75% Non-REM sleep, and 25% REM sleep. Non-REM (NREM) sleep is composed of 4 stages, stages 3&4 are the most restorative stages of sleep. People with Narcolepsy do not go through these stages like they are supposed to. Generally, we go straight to REM sleep, or at least much sooner than normal (normally a person goes through all stages of NREM, and then about 90 mins in to sleep will hit REM). Personally, when I did my MSLT, 3/4 15 minute naps I went in to REM sleep, one of them within a minute of the nap. This is extremely abnormal as it means that I am not going in to the NREM sleep like I am supposed to, thus not getting the restorative sleep my body needs.

I couldn't find anything about the actual sleep of Narcoleptics besides that we enter REM abnormally fast. But the other things to consider is that during the day, when we (patients with Narcolepsy) are awake, we experience periods of EDS. The cause of these EDS episodes is our brain trying to impose REM sleep involuntarily. So it's not necessarily that our night sleep isn't good enough (which it's not) but also that our body is getting things confused and trying to start REM during wakefulness. From what I've read about Narcolepsy, this is due to the loss of Orexin (also known as hypocretin) cells in our Hypothalamus. These cells are important (though not fully understood) in regulating sleep and wakefulness. Those with N only have about 5-10% of the amount of orexin cells that we should. This is why our body is getting 'confused' and abnormally regulating our sleep and wake cycles.

Hopefully this wasn't too jumbled and hopefully it answered some of your questions. :)

Oh, and about frequently waking up. I was thinking about this recently because during my teens I never had problems staying asleep. However, the last few years I have noticed a pattern where I generally wake up at least once during the night. The only theory that I have about this, is that REM sleep is closer to the end of the sleep cycle. Though people will generally go through the stages of NREM and REM multiple times throughout the night. But for me, when I wake up I generally remember my dreams very vividly, leading me to believe that I'm waking up out of REM (and not NREM, since most dreaming is in REM). I don't know why I wake up, but that these are usually the times I do. And from what I've read, REM is not a 'deep' stage of sleep. It's not a light stage though either. But since it isn't a deep sleep, I would think it would be easier to wake up from.

#5 dasikins

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Posted 26 February 2013 - 09:25 PM

This was great stuff!



#6 sk8aplexy

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Posted 27 February 2013 - 09:35 PM

Some interesting articles, not specific to N yet maybe in some odd way/s, such can relate for some?:

 

Sleep Reinforces Learning: Children’s Brains Transform Subconsciously Learned Material Into Active Knowledge:

    http://www.scienceda...30226081155.htm



Study finds children better at converting implicit into explicit knowledge after sleep:

http://medicalxpress...-knowledge.html



#7 N50+

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Posted 02 March 2013 - 10:45 AM

"The cause of these EDS episodes is our brain trying to impose REM sleep involuntarily."

This is about one of the simplest and most accurate explanations I have ever seen! This will help me explain to PW/oN what EDS really is. It is not like when they fall asleep. When this happens, PWN (like me) don't always recognize it and explains how one can "fall asleep" in the middle of doing something non stimulating. I have SOREM with my N and it does intrude on me. I wish I was better at recognizing it before it happened but it seems to just happen with no warning or trigger other than performing a non stimulating activity (driving, talking on the phone, talking to a person, reading a book or article on the computer, etc) and even then, it doesn't always happen at those times. When it does happen, however, the results can be devastating. Fortunately, they haven't yet been hurtful to others. I am on meds and do take them as directed. But sometimes it still happens and the thought of it scares the hell out of me.
It is for this reason that I am going to ask to go back on xyrem despite the difficult side effects and potential risks. It attacks the problem at its source rather than the daytime meds which just treat (mask) the symptoms.
I know it could always be worse, but this is what I have and the fact that it could be worse doesn't make it suck any less.
Sure hope the FDA puts Narcolepsy on their list for patient focused initiatives and finds a better solution than what we have available today.

#8 exanimo

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Posted 03 March 2013 - 06:23 AM

"The cause of these EDS episodes is our brain trying to impose REM sleep involuntarily."

This is about one of the simplest and most accurate explanations I have ever seen! This will help me explain to PW/oN what EDS really is. It is not like when they fall asleep. When this happens, PWN (like me) don't always recognize it and explains how one can "fall asleep" in the middle of doing something non stimulating. I have SOREM with my N and it does intrude on me. I wish I was better at recognizing it before it happened but it seems to just happen with no warning or trigger other than performing a non stimulating activity (driving, talking on the phone, talking to a person, reading a book or article on the computer, etc) and even then, it doesn't always happen at those times. When it does happen, however, the results can be devastating. Fortunately, they haven't yet been hurtful to others. I am on meds and do take them as directed. But sometimes it still happens and the thought of it scares the hell out of me.
It is for this reason that I am going to ask to go back on xyrem despite the difficult side effects and potential risks. It attacks the problem at its source rather than the daytime meds which just treat (mask) the symptoms.
I know it could always be worse, but this is what I have and the fact that it could be worse doesn't make it suck any less.
Sure hope the FDA puts Narcolepsy on their list for patient focused initiatives and finds a better solution than what we have available today.

 

I'm glad you found that helpful! I wish that there was more information on this topic, because it seems that all you can find is how we get more REM sleep or how we go in to REM faster than normal, or even that our sleep is regulated differently. But there are few articles that discuss the actual structure. It took me a lot of schoarly articles to find information to piece together a paper I wrote, which is what I based that information on. I know when I first given meds for N, I was like yay! No more sleepiness! But I soon found out that it is definitely not a solution, it is just as you said, a mask for the symptoms. And the meds unfortunately do not last for long - they become slowly ineffective. :( But I'm interested in xyrem, I haven't taken it, but it is interesting that it is supposed to help regulate your actual sleep. Unfortunately, I never have long blocks of time - as I go to bed late and wake up early. :(

 

So you don't have any signs for when you are going to fall asleep? Are these microsleeps? I've been noticing that what I call falling asleep, is not actually falling asleep, but microsleeps, which is where we get the REM intrustion. The shorter the episode, the more likely it is a microsleep. The longer, the more time your body has to adjust to an actual sleep episode. When I have microsleeps, I generally notice that I am sleepy, and will slowly become more confused and unable to focus. I lose small bits of conversations, or what I'm thinking. I become confused about what I'm seeing and hearing. These are what I deem microsleeps, and they are short in duration. Sometimes, and it's often during long lectures or movies, I will have a string of these, as I try to stay 'awake'. But they will just keep going. I have one, I snap out of it for a few minutes, and slowly fall in to another. But other times, I will actually fall asleep. I think it starts out as a microsleep, but slowly my body adjusts it to actual sleeping. This is where I'll fall asleep during class for 10 minutes. 

 

Anyway. Just some more information (from my personal experience) to give you some more stuff to think about. :) 



#9 sk8aplexy

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Posted 03 March 2013 - 12:07 PM

Again, very well said Examino.

Can completely relate to the 'micresleeps' in ...

For me, if I'm watching some show (and more-likely so, some movie) which is non-stimulating, these happen and I find my head falling forwards, or that I must rest on my arms upon desk, or just the nodding begins.

It'll be like I've lost entirely what is going on in the show, or I may note I'm paying no attention (basically dreaming elsewhere), sometimes I can get up and walk to the kitchen and/or break from it then rewind and start trying to watch again.  As for them occurring say mid conversation, that tends to occur with me if I've been exhausting myself or it's just one of those days I awake unrested, or perhaps it's very late and I'm attempting to stay awake to be around others; yet I don't interact very often as it can be difficult. 

Sitting at my desk the microsleeps (or where I actually nod out, perhaps this would be more of a micronap?) can be very rough on my neck, I try hard to catch them as they begin or are about to, and basically just go from my chair over to my bed; yet that doesn't happen often and I may stretch my neck unintentionally as I sit with head slouched forwards, this leads to headaches too (argh) for me...



#10 exanimo

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Posted 03 March 2013 - 03:10 PM

That sounds quite unpleasant, sk8atplexy! I've never thought about it affecting my neck... I've always been pretty good about holding my head up during microsleeps.. Say I'm in class, well I wear glasses, and they're kind of those smaller oval shaped lenses, anyway, I'll be looking at the professor, and once I hit a microsleep, my head will only slightly fall forward, so when I am alert again, I just have to slightly pull my head up to see the professor/board through my glasses. Or I will hold my head up with my hand by resting my elbow on the table. Have you ever seen a chiropractor? Or massage therapist? I see a chiropractor when my back and neck are bothering me, he usually uses an activator to put things back in place, as I cannot stand manual adjustments or people cracking my neck. But it really does seem to help. The massage therapist is also a good option for helping muscle tension. 

 

Mine don't probably happen mid conversation, if I'm really engaged. But like yesterday, I was studying with a classmate, at a table in the cafeteria (which was closed) and the lights were dimmed. She was quizzing me, and I just kept going in to microsleeps. But I finally got up and walked around which helped. I also forgot to take my Nuvigil yesterday, which was probably why I was so much more tired than normal. 

 

I can definitely relate to falling asleep during movies! I think most of us probably aren't 'movie people' because of it. My boyfriend is a movie buff, and works at a video rental store, and I just can never seem to stay awake during them! I've gotten better at it, if we go to a movie playing at the theater, I time it so that it's going to be a good time. So I'll usually take a nap and go to a late showing. But I just don't choose to watch them much, as I usually miss all or part of it due to falling asleep. *sigh*



#11 sk8aplexy

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Posted 03 March 2013 - 05:03 PM

Good stuff.!

Having skateboarded and played ice hockey, snowboarding and more, I've taken my share of damage from such.

It all relates to the neck issue/s.

I do see a D.O. who does accupuncture and cupping, which has helped for sure, but the aches are still frequent regardless.

 

Saw a chiropractor once, and let him do one adjustment with some tool, perhaps a activator. 

I did not return, it was too odd and I still can't say that it helped or made things worse, it was just very odd and for weeks I felt somehow adjusted.