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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
newguy1
 
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REM Apnea | REM Sleep Behavior Disorder

Postby newguy1 on Tue Apr 06, 2010 9:53 am

Hi. New to this forum but just diagnosed with REM Apnea (RDI over 40 during REM sleep only) and REM Sleep Behavior Disorder (or REM sleep without atonia). Starting CPAP shortly.

I was wondering if there is anyone on the board who was diagnosed with REM Apnea and REM Sleep Behavior Disorder. My Dr. says that CPAP may decrease movements/behavior events but I'd love to hear from someone who has been through this and it either helped or didn't. They said in a few patients it stopped the RBD entirely.

Thanks in advance!

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby kteague on Tue Apr 06, 2010 12:02 pm

Hello and welcome. While you're waiting on first-hand experiences, I just wanted to suggest you take measures to secure your CPAP machine so any movements don't result in a yanked off machine. Some have velcroed the machine to its stand, or a more secure means might be safer. Also, the hose can be anchored so that jerks stops short of the machine. I'd keep a spare hose if this technique is used.

The replies to this thread are of interest to me, as before sleep apnea was even on the medical field's radar, my late father had (in retrospect) horrible apnea and REM behavior issues. I have often wondered if in a later day and time, treatment of his apnea would have given him the peaceful sleep he was missing.

Hope your experience will be be that treating your sleep apnea indeed does relieve your REM activity.

Kathy

EDIT: P.S. Just did some reading. and it seems those with RBD are more likely to see PLMD during REM. Those without RBD usually have them in nonREM.
Last edited by kteague on Wed Apr 07, 2010 11:26 pm, edited 1 time in total.

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby Muse-Inc on Tue Apr 06, 2010 1:34 pm

Depending on your machine, you might be able to use a longer hose. Machines are supposed to be set lower than you, mine sits on a non-slip 1-step library step next to my bed...you might think about where to position yours so it isn't pulled onto the floor from a height risking damage.

Welcome aboard!

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby JohnBFisher on Tue Apr 06, 2010 1:55 pm

newguy1 wrote:... New to this forum ...

Well, first, let me say "Welcome!" to the forum. Hopefully you will get some helpful answers here.

newguy1 wrote:... just diagnosed with REM Apnea (RDI over 40 during REM sleep only) and REM Sleep Behavior Disorder (or REM sleep without atonia). ... My Dr. says that CPAP may decrease movements/behavior events ... They said in a few patients it stopped the RBD entirely. ...

Okay, first of all, I don't have RBD (REM Behavior Disorder). I do have problems with central and obstructive apneas. I know that when I have more problems with untreated central apneas I have a LOT of problems with RLS. When it is properly treated (and with a little bit of medication), I have no problems with it.

I suspect your doctor wants to see if CPAP helps lessen the RBD. You may still need medication. But if it helps, then the medication needed will be reduced. And that's usually good, since such medication can have some side effects. And generally doctors are taught (and I think, correctly) to use the least amount of intervention. If CPAP resolves or lessens the problem, then that's the best first step. If not, the obstructive apnea had to be handled anyway.

However, you should probably research some of the other causes for the REM Behavior Disorder:

http://emedicine.medscape.com/article/1188651-overview

Which specifically notes:

Several studies over the past few years suggested that RBD is frequently associated with neurodegenerative disorders characterized by alpha synuclein deposition, including Parkinson disease (PD), multiple system atrophy (MSA), and Lewy body dementia (LBD); RBD is less frequently associated with nonsynucleinopathies.

Don't panic. I'm NOT saying this is your case.

It could just be that your body .. in an effort to keep you breathing during REM sleep .. disengaged normal dampening of movement during REM sleep. Once the obstructions are handled, it could be your body will allow normal REM sleep with atonia (no muscle activity) to occur. It sounds as if your doctor wants to eliminate that as a possibility.

Here's some example articles about this:

Severe Obstructive Sleep Apnea/Hypopnea Mimicking REM Sleep Behavior Disorder
http://www.journalsleep.org/Articles/280205.pdf

REM Sleep Behavior Disorder: Clinical, Developmental, and Neuroscience
Perspectives 16 Years After its Formal Identification in SLEEP

http://www.journalsleep.org/Articles/250202.pdf

Which specifically notes:

Three patients treated with nasal CPAP had resolution of their pseudo-RBD with control of OSA. It thus appears that in OSA, obstructive apnea-induced arousals from REM sleep with vivid dreaming can result in immediate, post-arousal, dream-enacting behaviors with locomotion, agitation and violence. This state could be called an obstructive apneainduced, hypnopompic REM parasomnia that closely resembles RBD.

So, it's quite possible this might be your case. Certainly with the OSA, that should be eliminated as an underlying issue.

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newguy1
 
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Re: REM Apnea | REM Sleep Behavior Disorder

Postby newguy1 on Tue Apr 06, 2010 3:03 pm

Thank you all for your responses - I appreciate them.

The information on securing the machine is great. I hadn't thought of that and its certainly probably going to be an issue.

K-teague - curious and if you don't mind - did your father develop Parkinson's or a related disease?

John - Your post would have scared the hell out of me if I wasn't already aware of it. But since I have some other neurological symptoms on the table it is certainly something we are monitoring. I am young relatively for those horrible diseases (mid-30s) but there are of course exceptions to the rule. The practice I see says that most of their RBD cases of people in 20s and 30s are generally isolated and after years and years of follow up didn't progress. However, since I have some additional symptoms they acknowledge I may be a different case. They also noted that some of their patients with RBD did respond to cpap and lessened/eliminated the RBD. I am hopeful that is my case. I appreciate your references. I will check them out.

Thanks again to all who responded. If anyone has experienced this personally - I'd love to hear from you.

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby SleepingUgly on Tue Apr 06, 2010 7:58 pm

newguy1 wrote:I was wondering if there is anyone on the board who was diagnosed with REM Apnea and REM Sleep Behavior Disorder.


Hi newguy, welcome. Are you by any chance on antidepressants? I'm certainly not making a diagnosis here, but on some occasions, RBD can be caused by antidepressants. Another possibility is withdrawal from alcohol or sedative hypnotics, although I assume your doctors would have thought of that. Obviously PTSD is on the differential. Do you have any symptoms of narcolepsy?

I read an article about Apnea that occurs exclusively in REM, and I started wondering if it's ever treated with medications that reduce REM sleep....

Here is an article that may interest you:

http://www.journalsleep.org/Articles/280205.pdf
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby kteague on Tue Apr 06, 2010 11:19 pm

My father died at age 57 due to colon cancer, but at that time he had no symptoms Parkinsons's or any other neurological issues. He just snored and snorted horribly with gaps in breathing, and sometimes acted out his dreams, usually bad ones.

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby newguy1 on Wed Apr 07, 2010 10:55 am

Kteague - I am sorry for your loss but appreciate the information.

Sleeping Ugly - No - never on those types of meds. I tried numerous meds after onset to see if helped symptoms but none worked except klonopin with side effects. No symptoms of narcolepsy. Just strange involuntary repetitive movements during sleep - subclinical RBD I am told. Horrified of implications but trying to stay positive and hoping CPAP will help. Appreciate thoughts on differentials - always looking for more.

Thanks again.

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby JohnBFisher on Wed Apr 07, 2010 11:10 am

newguy1 wrote:... No symptoms of narcolepsy. Just strange involuntary repetitive movements during sleep - subclinical RBD I am told. Horrified of implications but trying to stay positive and hoping CPAP will help. ...

I think you have every reason to be positive.

Again, I'm no doctor and really don't pretend to be. But I've done a lot of research on RBD, since Sporadic OPCA (what I do have) about 3 out of 10 times turns into Multiple Systems Atrophy. So, let me share my thoughts just based on that research.

I suspect you developed your obstructive apnea over a long period of time. This would have allowed your body to slowly but surely adapt to the situation. Since it only triggers during REM sleep and REM sleep is vital to our health, I suspect your body slowly but surely discovered that your OSA events were less when it dropped the normal loss of muscle activity during REM sleep. It's really pretty amazing how neural networks function. They discover something that works well and then latch onto it. There are numerous examples where researchers discovered that a neural network discovered a unique solution using an amazingly small number of steps due to an unexpected connection between different inputs. And that might be what happened for you. Whether it is good for us in the long run does not matter. If it solves the immediate problem, then that solution will be adopted.

But what happens if you can remove the obstructive apnea events? It is also possible that your body will once again determine that it can re-engage the normal atonia during sleep. It may take time. But I suspect that is what happened in the case of those subjects documented in the papers. We can also hope that's what will happen to you.

Anyway, this is just my thinking based on my own research ... but I sure hope it will be the case for you.

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby newguy1 on Wed Apr 07, 2010 4:33 pm

John - thanks for your reply. I find it fascinating - I am familiar with OPCA and wish you the best - I am sure it has been difficult.

I am in fact worried of MSA with some of my symptoms - such a rare disease and even rarer for some in mid-30s (although I have lurked on other boards and there are certainly a few folks with firm diagnosis in that age range). Again no definitive diagnosis but some movement/neuromuscular problems, autonomic problems and of course the sleep problems. I am hoping/praying/etc that you are right and that sleep is the key.

I have looked at some of my PSG reports and my provider included some of the detailed minute recordings of events both apneas and movements. I am not certain (layman albeit medically literate more than most) but I certainly believe some movements occurred during or right after an apnea event. I can't tell if the EEG shows an arousal/awaking as some of your literature suggests as mimicking but believe some are. However, some did not have apneas/arousals - I was just dead asleep - no apneas or arousals - and movement.

Thanks again - I always find it welcoming to talk to others in similar situations as many physicians are unwilling to listen or think outside the box.

Best.

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby JohnBFisher on Wed Apr 07, 2010 5:02 pm

newguy1 wrote:... I am familiar with OPCA and wish you the best - I am sure it has been difficult. ...

"Interesting" is the word I use in polite company. And it brings new meaning to the old curse:

May you live in "interesting" times!


As side note ... I love reasearching things. I just found the following website that discusses this "curse". Appears it's as "Chinese" as Apple Pie and Chop Suey!

http://chinasprout.com/community/guestcolumns/21

But yes, it's definitely been "interesting". I continue to struggle with my sleep. Today I can hardly think clearly due to the tingling. As I told my wife, it feels as if even my hair is tingling! Yuck! My symptoms appear to be progressing a little more aggressively. And I fear it interferes with my ability to work. Or event think straight. (And yes, blood sugar and blood pressure are fine ... Folks, I appreciate the input, but I spent THOUSANDS of dollars to find out that there are no unusual issues. It just appears to be an issue with my cerebellum / brain stem area.)

newguy1 wrote:... such a rare disease and even rarer for some in mid-30s ...

You have my empathy. I was in my early 40s (if not 40) when I was diagnosed. Fortunately, until recently the progression has not been an issue. But eventually in the progressive damage to neural nets impacts me. I try to adapt, but there is just so much that I can do to adjust.

newguy1 wrote:... However, some did not have apneas/arousals - I was just dead asleep - no apneas or arousals - and movement. ...

By the way, it's great that your doctor provided that level of detail. Many fear their patients won't understand and will misinterpret the data. It's a sign of a good doctor and a good relationship you've developed with your doctor.

Even if you don't eliminate all the movement, if you can cut some of them down by eliminating the obstructive apnea, it may give you the chance to get better sleep. I would normally say "You can't imagine...", but you can - unfortunately. So, as you can imagine, if you sleep well, it will tend to minimize all the other symptoms (even those during the day).

newguy1 wrote:... I always find it welcoming to talk to others in similar situations as many physicians are unwilling to listen or think outside the box. ...

I do understand. I am EXTREMELY lucky to have found my current neurologist. He assumes I report things accurately and orders tests (when possible) to check out symptoms. He always wants to eliminate other possible causes, but does not "freak" when it's not a normal issue. It took me almost 15 years to find this one able to really LISTEN and ACT. I've been complaining about central sleep apnea for almost that entire time. I had two different neurologist tell me it's just anxiety. The funny thing is that you need to understand I am an engineer who acts as problem solver for complex issues. I've dealt with VERY complex, very high stress situations my entire career. You don't last long if you let anxiety get to you. In fact most customers comment on how calm and patient I am as we work through issues. Passionate, but not full of anxiety. So, to tell me my problem is just anxiety ... well, it's clear some physicians - when confronted with a situation they don't understand - start to blame the patient.

So, I sure do understand. And I concur.

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kteague
 
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Re: REM Apnea | REM Sleep Behavior Disorder

Postby kteague on Wed Apr 07, 2010 11:06 pm

newguy1 wrote: Just strange involuntary repetitive movements during sleep


Sure sounds like a description of PLMD, or Periodic Limb Movement Disorder, to me. Are those repetitive movements frequently stereotypical, as in appearing very similar? And is there a rhythm or pattern at times to the timing of the repetitions? If you say yes to both of these questions, it would sound even more like PLMD. Oh, are the movements exclusively during REM?

Kathy

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby newguy1 on Thu Apr 08, 2010 9:04 am

John - I did not mean to imply you were fascinating or interesting in a negative sense - I was referring to your previous post itself in which you mentioned OPCA. I too have had many many tests done - not covered by insurance - "experimental", etc. Always looking for a cause that might be treatable. The difference between OPCA/MSA and treatable condition or even Parkinsons is drastic with brain stem/autonomic involvement so continue to look. I am still trying to find the right neurologist - have a good PCP that is very active (although I pay for it - not taking insurance) but no luck in neuro. Sleep Dr is great.

K-teague - Yes it sounds like it doesn't it - repetitive stereotypical movements. But its all during REM. I actually was told it may be nocturnal frontal lobe epilepsy which is stereotypical movements but a leading epilpetologist said its usually only one two stereotypical movements not the 6 or 7 I have. Thats why I am told its subclinical - REM sleep without atonia but not the attacks that are the hallmark. However the early movements are seen as a prodrome or early indicator of the attacks although some don't always progress since they are treated effectively.

Thanks again.

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby SleepingUgly on Thu Apr 08, 2010 10:58 am

Newguy, you saw the link to that article that I posted earlier, I hope.
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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Re: REM Apnea | REM Sleep Behavior Disorder

Postby newguy1 on Sun Apr 11, 2010 9:37 pm

SleepingUgly wrote:Newguy, you saw the link to that article that I posted earlier, I hope.


I did - thank you.

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