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#21 Livi

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Posted 24 August 2013 - 12:11 AM

Iron, I reacted the same way as you the first time I was diagnosed with N, because it validated everything I had been struggling with, including my family thinking I was lazy. It all suddenly made sense.
But now it's different. I've had 3 years since that initial diagnosis and I was looking forward to showing people that I had kicked this thing. That's why I'm now on the opposite end of the spectrum. I thought I was hallucinating when I saw this result because I didn't think I had slept at all during the naps. I am very disappointed because to me it means that I really can't kick this thing.

I know what you mean about labeling. It's exactly what I had written to the woman who is frustrated with her IH diagnosis, while she is getting more intensive treatment than I am. It's all just a label and doesn't change the way you feel physically. But I guess it does emotionally.

#22 ironhands

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Posted 24 August 2013 - 12:21 AM

Until there's a solid way to boost orexin in the brain, nobody can really kick it, all anyone can do is minimize the symptoms.  There are some people working on it, but since there's such a limited market, it's not a viable product - unless it can also be marketed as an appetite suppressant or antidepressant, which are strong possibilities as well.  

 

It may sound callous, and it's not my intention, but I wouldn't hold out for a feeling of "kicked it", since you'll likely be setting yourself up for disappointment.

 

However, look at it this way - you didn't think you'd slept, did you feel tired?  It's not really about how you perform on the test, but about how your symptoms are presenting themselves.  It's not like a math quiz, there's not really a pass/fail.

 

If you have your symptoms more or less under control, then you actually have kicked it, or at the very least, you have it on the ropes.  Try and keep it positive and I'm sure you'll feel better all around.



#23 Livi

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Posted 24 August 2013 - 08:59 AM

Sometimes neurological issues "work themselves out". For example, nerve pain after an injury, which I was seeing a neurologist for (she is not my sleep doc). she asked me about my narcolepsy. I said I was feeling better, and she said, "it worked itself out?" As if that was a normal occurrence.
Also, I know that Orexin is stimulated by eating protein and I think the body is able to start producing it again. Sort of like how an antidepressant changes your brain chemistry so that eventually you can go off the antidepressant and not be depressed anymore. Your brain just needs that jump start, to be shown HOW.
Also, I am a spiritual person. I believe in and have personally experienced a loving God who heals our diseases when we look to Him. I will never give up hope even though I am disappointed these past few days.

#24 Livi

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Posted 24 August 2013 - 07:56 PM

Hey iron, just looking through my 2 PSGs back in 2009 when I had sleep apnea. The EEG readout looks like yours but more craziness in it. Maybe you also have sleep apnea?

#25 ironhands

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Posted 24 August 2013 - 08:17 PM

That was the original thought from my dentist, based on some weird marks on my tongue, but I tested ZERO sleep apnea eventsm which is odd based on my extreme snoring.  Doc also thought it was really odd, since he's rarely, if ever, seen a zero, especially with my fat ass and snoring.  He's concerned about the validity of the first test, and so am I based on a lot of other factors.  As it stands though, I do have a lot of markers for N.  Meh, whatever happens happens.  I just want something to help with the EDS.



#26 Livi

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Posted 24 August 2013 - 09:33 PM

One doesn't negate the other, and if you do have any level of sleep apnea on your next PSG I recommend treating it. When I had "mild" sleep apnea 3 years ago (11 RDIs/hr), they downplayed any treatment for it. Today I realized that my most recent poly showed only 2 RDI. (maybe because i lost 10 pounds?). Maybe no more sleep apnea is the reason I feel so much better than I did 3 years ago. I wish they had emphasized treating it because even mild apnea did make my EDS much worse.
I wouldn't believe the 0 Apneas result if I were you.... Hopefully your next test will be accurate - whenever that is.

#27 Livi

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Posted 30 August 2013 - 11:55 AM

Just a weird question about REM:

 

If you're doing your MSLT, and you fall into Stage 1 sleep which is very light sleep, and you're still aware of your surroundings, and you start imagining "counting sheep" jumping over a fence, is that considered REM?  Is that lucid dreaming?  



#28 ironhands

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Posted 30 August 2013 - 12:16 PM

lucid dreaming is where you're consciously aware of dreaming, think of it a little like the matrix



#29 Livi

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Posted 30 August 2013 - 12:18 PM

But is it REM, when you know you're imagining sheep jumping over a fence while you're in Stage 1 sleep.



#30 Hank

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Posted 30 August 2013 - 12:23 PM

stage 1 is stage 1 and REM is REM. dreams do not happen in stage 1. Some dreams (like night terrors) can happen in nonREM stage 3/4 sleep. 

 

It has been confusing for me because what I am thinking about when I begin to fall asleep tends to roll over into REM. And, for PWN we race into REM. I never took naps because I thought I was just lying there awake wasting time.  

 

On my MSLT, the 2 naps where I reported I had not slept (just laid there thinking) were the same 2 naps where I hit REM within 3 minutes.

 

So, now when I nap, I repeat the same thing over and over (first line of Lord's prayer). When my thoughts start wandering, I tell myself I am dreaming. I seem to have the ability to wake myself up from within a drean (others too) and that just ruins my sleep. I am told that "Lucid" aspect where I can tell myself I am dreaming- that awareness within a dream- is not uncommon for PWN because there is an instability between sleep/wake states. Go figure.

 

It all sounds so odd, but it just is what it is. When my eyes are closed, I take it all with a grain of salt.



#31 ironhands

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Posted 30 August 2013 - 12:33 PM

If you're experiencing a dream-like state during stage 1, it may be associated with hypnagogic hallucinations



#32 Livi

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Posted 30 August 2013 - 12:38 PM

Yeah, that's why I was asking.  I reported that I had not slept on 4 of my naps, but on 3 of those 4 I had hit REM.  I guess my thinking about stuff rolled into REM.  I know Stage1 is Stage1 and REM is REM but I wasn't sure how the brain waves look in Stage 1 vs REM or how the electrodes for eye movement register REM.  If you purposely move your eyes around alot in Stage 1 then the electrodes for eye movement would register rapid eye movement, but I guess the EEG waves would show Stage 1 sleep.

Your last paragraph makes sense with what I experience.



#33 Hank

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Posted 30 August 2013 - 12:54 PM

Alpha, theta and delta waves are present in different stages of sleep. Then there are sleep spindles and other stuff. I consider all that stuff way too technical for my need to know- like a "users manual" vs schematics.

 

Eye movements alone do not indicate REM sleep. And voluntary vs involuntary movements register differently. There is no way to give a false REM by moving your eyes. If you purposefully moved your eyes, it would show a consistency with purposeful eye movement. You just can't fake the real thing.



#34 Livi

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Posted 30 August 2013 - 12:59 PM

Ok.  Was wondering if you could get a false positive for REM.  Thanks.  

 

Also, I remember being aware of swallowing every few minutes.  So I don't see how I could have been asleep like they said I was, if I was thinking and swallowing and hearing the footsteps in the hallway.  I didn't remember any dreams.



#35 Hank

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Posted 30 August 2013 - 01:10 PM

So many mysteries to being us.

 

Again, when my eyes are closed, I take everything with a grain of salt. I don't believe a word my brain says when my eyes are closed. Just like I don't believe our dogs when they stare at their food bowl- they are tricky.

 

I give you credit for having a curious mind and searching for so many answers. Ask your questions and get your answers- whatever puts you at ease.

 

I like to think of a line from the movie Tommy Boy- "You can get a good look at a T-bone by......, but wouldn't you rather take the butcher's word for it". That keeps me from overwhelming myself with questions and I have a tendancy for that.



#36 Livi

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Posted 30 August 2013 - 01:35 PM

Good point, Hank..... and knowing for myself how tired I am all the time, and that I could fall asleep in 2 seconds as I type this, I really don't doubt my results when all is said and done.... guess I'd still rather be in denial for as long as I can.