Livi

Rem

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

My MSLT showed 3 REMs but 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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Thanks Hank. That's what I figured. I am so devastated because 3 years ago I only had 2 SOREMs, and this time I had 3, both times with a 0.7 minute sleep latency. I had thought that I was better. I guess I am just managing it better. Now I'm so p1ssed about it that I'm doing all the wrong things on purpose like drinking espresso & eating tons of sugar and processed foods, not exercising or drinking enough water, etc. not sure how to deal with the devastation in a healthier way. Nobody in my life understands - they are so invalidating.

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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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Well, I can't figure out how to download the figure from the emailed report on my new iPad. Sorry. But I didn't go into REM for a long time on my poly, thanks to a million interruptions. Also, my REM jumped up and down from R to W.

I really hope it goes well for you tomorrow - sounds like you have N. :( I hope the doc will be helpful to you. Does cutting out gluten really help? Sounds too difficult for me, and expensive! And I'm so bad at being self-disciplined. Need someone to kick my butt to give me the motivation to take care of myself. The sleepiness makes it hard. The depression, too.

I agree about people's responses to both!

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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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Ok, attached is my PSG "single channel rhythm strip revealing a regular rhythm."  I guess it won't help you, if it was normal.  REM was extremely late.  Sleep time included 71 arousals and 14 complete awakenings amounting to 16/hr, with "no identifiable cause for most of them."  Haha -  it was the electrodes, dummies!    No clinically significant sleep disordered breathing (only 1 central apnea, 7 hypopnea, 1 RERA, 2 RDI, whatever all that means), which is good, because my last PSG showed definite sleep apnea. 

 

Anyway, about gluten free,  I LOVE rice noodles, but unfortunately I can't have them   :(     They have a high glycemic index, which basically means that the body treats them like sugar and they make me crash.  

I also am a bread addict, and a chocolate addict.   :(   

I'm bummed about everything I have to give up.  

PSG rhythm.pdf

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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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You are relieved that it's most likely narcolepsy? Or that the students didn't know? When is your MSLT scheduled for? You said in a few weeks? The test is kind of important. :). Your hypnogram is hard to see, do you have an electronic record?

Yes there were LOTS of noises the whole night, very annoying. You'd think the sleep rooms would be sound-proofed. There was a 24-hour gym over my head with a treadmill going Thump-Thump-Thump. Ahh, not a good night..

It's bread and wine and cheese for me! In fact, I think I'll have some right now. I'm still in rebellion over my diagnosis.

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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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At least you can celebrate... I am more depressed now than ever before. I was hoping I'd have IH which to me is a step down. same treatment though. Just don't want to be narcoleptic. Would trade with anybody on this site who wants to have narcolepsy.

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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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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.

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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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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.

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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?

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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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