Livi

Rem

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Anybody know if early-onset REM can be caused by not enough sleep the night prior?

 I only had 318 minutes total sleep time the night before. (5.3 hrs)

I couldn't get to sleep with all the wires and especially the nose tubes.

The techs must have woken me up 30 times to fix the nose thing that kept coming out, and the electrode that kept falling off my leg. The nose tube wasn't in right despite all the adjustments so I couldn't breathe half the night until a new tech came in and fixed it around 3. Ahhh! I could breathe again! I heard the calibration in the next room 2 hours after I went to bed and I thought it was for me so I was following the calibration instructions! Then my foot started cramping and I had to ask to take aspirin in the middle of the night. It was just not a good night hence the 5.3 hr sleep time. The results say narcolepsy "with caution" due to the lack of sleep the night prior. So I was wondering if lack of sleep does cause early onset REM.

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Can be caused by sleep deprivation, depression, schizophrenia and a few other psych issues. 

 

The techs woke me up all the time during my PSG, there's a 2 hour waking period.  I was so bloody stressed and angry from being woken up and performance anxiety about the whole thing.  I'm glad I didn't have an MSLT done.  Probably need one done though.  I assume for that, there's nothing other than the EEG electrodes, right? 

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5.3 hours of sleep would not account for 3 REMs. That is diagnostic. For 3 sleep onset REMs, you would need to have been awake for something like 48-72 hours straight. It sounds like you are on the right track with a cautious doctor. I hope you get your answers.

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If you choose to self destruct then you will have let the nobodys in your life win.

Give 'em the finger, blow razberries at 'em, tell 'em to stick it....YOU do what's best for YOU! F 'em!

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wait a sec.. are SOREMs almost as bad on a regular PSG?  I understand that they'd be worse showing up after a night of sleep, I'm still trying to figure out my hypnogram, and if I'm not overreacting to my results.  This is after a night of "regular" sleep.  What I find relaly odd, is the period between 3:30-4pm, you may not be able to see it, but around 3:50 to 4:10 it's jumping back and forth between S2 and REM.  Does anyone else have a hypnogram posted somewhere for reference?  All I've found is normal ones, that look nothing like mine.

 

IMG_20130814_145257.jpg

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Thanks Ferret. :)

Iron hands, I do have one on the bottom of my report but I don't know how to read these things :/

I could try to scan it.

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Coo - sorry to hear things didn't go as well for you last time.  I've been trying to deal with my stuff for, well, forever.  I kicked out sugar about 5 years ago, gluten for the past year, and now I bike 5 miles a day to and from work.  Cut caffeine about 6 months ago too.  I feel so much worse now too, but better than I would have been last year without caffeine.  Then again, I may not even have N and just be dealing with hypersomnia.  I'll be leaving in about 12 hours to find out for sure.  I'm going to seriously lose my mind if this new doc refuses to acknowledge my concerns.  Losing an entire day of work for a 15 minute consultation.

 

 If what I'm going through is only a fraction of what you have to deal with, you have my utmost empathy, but I know what you mean about people not understanding.  It's similar to the way people think of depression.  "Why are you depressed??  Nothing sad has happened to you!"  

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It really does seem expensive at first when you look at the gluten free products specifically, which is why I don't buy them at all.  I just stick to rice and potatoes.  For pasta, the asian rice noodles work as a perfect substitute.  The only think I miss is bread, and I'll cheat once ever 2 weeks.  I've found it gives me a little more energy/well being, since it may be helping my nutrient absorption.  Maybe it's just psychological.  I still get really strong cravings for breads, beer, and sweets.  If I have the beer or sweets, I'm down for the night, they put me right out.  On my way to the doc now.  I hope this is finally the day things turn around.

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Just got back.  The doctor told me exactly what I thought.  Most likely N.  He was asking his students what they thought it was, they didn't know.  I'm so relieved!!!

 

Gotta re-do the overnight though, and then an MSLT :(

 

I didn't realize they were that high for sugar.  Have you seen the studies on sugar with orexin?  Seems many on N are really drawn to sugar, beer and cheese.

 

Bread and anything high carb are often sought out by depression.

 

Doc today also confirmed what I've thought all my life- the depression isn't a mood issue, but purely chemical.  I can finally see light at the end of the tunnel.

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Your hypnogram looks nice, though I can see about the REM being pretty late, but that may actually be a good thing.  Looks like some nice valleys compared to mine.  A lot of wake-ups probably caused it, did they note apnea events or do you remember noises?  everything about my test was spikes, be interesting to see how it is in a few weeks when it's re-done.

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That it's narcolepsy.  It's a huge relief.  I'm a techie, knowing what the source of a problem means you can fix it.  It's also a big middle finger to everyone in my past who's called me lazy; I know now that it's not my fault.  Big weight off my shoulders, I can stop blaming myself.

 

My hypnogram looks like piano keys.  It's all just straight up and down, not stairs like yours (and more other people).  I was kept up by snoring in the next room, the tech coming in 6 times in an hour to play with the wire box didn't help either.

 

LOL you read my mind.  I celebrated tonite with beer.  I got too sick from wine a long time ago, can't go near the stuff.  Cheers!

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For me, N and C is still better than a brain tumor and aneurysm- I was tested for so many scary things. I was devastated over N at first- at least a brain tumor had some credibility. N seemed like the punch line to a bad joke. Ultimately, N is something I cannot change- only manage- and my life is still good.

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Thanks so much for the perspective. :). I think now I can appreciate it after a couple glasses of wine. ;)

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if it's the same treatment, there's no issue; it's all about how you're labeling it in your mind.  Having a diagnosis doesn't really change anything, but clearly we are both reacting to it on opposite ends of the spectrum :(

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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.

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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.

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