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Questions About Naps for People with Narcolepsy


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#1 nickatwabash

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Posted 06 December 2007 - 04:25 PM

I'm a 21 year old male and am going into a sleep study next month to find out if I have Narcolepsy. I've been doing a little research and the neurologist agrees with me that, right now, it looks like I may have it; of course, the official diagnosis won't be for another month.

My question is about naps. Part of the reason I even went to see the neurologist in the first place is that I have these frustrating episodes of sleep paralysis on the onset of sleep whenever I try to nap during the day; it doesn't seem to make one bit of difference how tired I am and it only occurs when I try to nap (weird?). Anyway, I know from research that naps are frequently recommended as lifestyle changes. But, as it is now, they cause me a lot of stress and are very frustrating because of this sleep paralysis... I mean, I can literally feel my eyes shooting back to forth as I instantly jump into REM when falling asleep and it's not one bit relaxing. I try to pretty much just avoid naps now because they always end up being a waste of time.

Does anyone else have this problem, or have had it at some point? If so, did it go away and how/when? Is there something that medical treatments can do to help eliminate sleep paralysis episodes or push the REM cycle back to where it's supposed to be?

Thanks,
Nick

#2 jlconrad

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Posted 07 December 2007 - 03:28 PM

Nick,
I definitely feel your frustration and anxiety. I am 22 and was diagnosed at 17. The reason I had a sleep study was because I took coma-like naps in half of my classes in highshool and it was scary. Hypnagogic Sleep hallucinations is what they are called I believe. Basically, I thought I was awake because I was hearing people in class talking and could kind of see the room. I couldn't move, breath, etc...eventually I would end up in a dark place where I felt like if I didn't wake up I was going to die. ALL of that was fake, none of it really happened but it felt so real and it scared the S$%! out of me. This happened almost everytime I fell asleep during the day and if I was tired enough this would happen before I went to bed. I would have to get up, drink some water and shake it off before I tried to sleep again because I was scared to death of going back to sleep. Now that I am properly medicated this rarely happens except in extreme cases of exhaustion or when I forget to take my medicine.

My advice to you is a few things...
1. Be patient, it took me 3 agonizing years before I got my situation under control.
2. PLEASE, PLEASE, PLEASE get in a routine with your sleep habits. Get up at the same time and don't stay up to late if you can help it. This is the only way I survive.
3. If you do end up with a prescription of something like provigil, take it early, at the same time. If you don't you probably won't sleep.

This is what I have found in my experiences. Hopefully this helps you. If you have any other questions or concerns, please get in touch with me. I know that sleep paralysis is real, it's scary, and it's debilitating. Hopefully your diagnosis will be successful. In my experience, once I was properly medicated this problem went away. Good luck

#3 Emo

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Posted 10 December 2007 - 05:09 PM

I'm wondering what other sensations you have during SP (sleep paralysis)? You've mentioned only the eye movement but probably you are aware of being paralyzed and all that. At one point, I was not aware of it because SP came on and departed too quickly. Like it went "Zzzzzt!!!" I did have some odd eye sensations at one time in the evolution of the condition: I could "hear" my eyes move (but I was able to voluntarily move them). Later, the whole thing began with a 'rising' sensation and then an abrupt 'fall' as I broke free of the condition. Even later as the condition began to last longer, I could be quite awake and conscious of the fact that I could not move. If I happened to be more on the sleep/dream side, this is when I would experience the hallucinations.

Oh, in the beginning, I was fearful of its happening and so, of course, it happened every time, including at regular sleep hours. Can't say my SP was really caused by my belief that it was going to happen, I think it was due more to the actual stress on my body as I worried about it.

The whole experience does seem to improve over time. I no longer have trouble with the hallucination part of it because I have learned to disbelieve it. I do still have some trouble with a mindless anxiety during the paralysis. It doesn't respond to reason! But within a minute or so, I either break out of it or manage to be calm enough to go to sleep. The SP is now quite rare for me and I think it is probably due to a regular, predictable life style but who knows? Methinks the plan is to relax and go with the flow as much as you are able to. It never hurts and you always come out of it!

Yep. I think overall, one learns to cope with the SP by some method or the other... ain't easy though!

Emo
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#4 nickatwabash

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Posted 11 December 2007 - 02:42 PM

You're right Emo, there are other sensations that accompany the eye movements. I am fully conscious during the sleep paralysis and often feel as though I'm being picked up and moved about the room in all sorts of directions, and sometimes even beyond the room. I assume that is technically considered an hallucination. My eyes are always tightly closed during these episodes, but sometimes when I feel like I'm being moved about I can still somehow see. I of course can't move or speak, despite the desire to wake myself up from it.

Thanks for the responses. It gives me a little hope that maybe one day I'll be able to not dread taking a nap.

#5 Emo

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Posted 12 December 2007 - 10:52 PM

Wal, I didn't include one eye movement oddity I suffered and this might match your experience a bit: Once or twice I discovered that my eyes didn't move, my body zapped around my stationary eyes!

My take on how all this happens is that our lizard brain, or sub brain or whatever, is attempting, in its rather unintelligent way, to make sense of some rather unusual sensations. Our little pea brain has never before encountered the sleep paralysis while conscious (or conscious to some degree) and it is assuming some physical explanations. It will also invent an out-of-body experience to explain the feeling of weighlessness that can occur when parts of our nervous system are shut down to prepare us for normal sleep and dreaming. This sub brain will decide that maybe we are flying or falling and who knows what all it may invent.

And perhaps there is some physical nerve interaction between one's eyes and the sense of balance. I know that the sound I heard (zzzzztt! zzzzzt!) when moving my eyes was some sort of crosstalk between nerves connecting both eyes and ears into deeper areas in my brain.

Hmmmmm. it takes too much typing to express but it all makes some sort of sense to me. Ya gotta enter into these things with the understanding that all these weird things are in your head, so to speak, and you can actually come to understand what is happening, if not control it. Yes, it gets easier with time and experience.

nite nite
Ol' emo

I'm narcoleptic. I steal stuff in my dreams!

#6 greatbig47

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Posted 14 February 2008 - 01:17 PM

Wow, Emo...Your description of SP is RIGHT ON...at least for me.
Good luck!