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REM Sleep Behavior Disorder (RBD)

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Biguglygremlin +0 points · 7 months ago Original Poster Sleep Commentator

Has anybody had experience with RBD (REM Sleep Behaviour Disorder)?

It's a disorder where the locks that prevent movement during REM sleep fail.

The result is that violent actions in dreams become real actions.

Shouting, kicking, hitting, launching out of bed.

https://www.mja.com.au/journal/2017/207/6/rem-sleep-behaviour-disorder-not-just-bad-dream

If you have this disorder or know of someone who has what steps were taken?

How did it develop and progress?

What was done about it?

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Sierra +0 points · 7 months ago Sleep Innovater

No real personal experience other than quite along time ago well before CPAP treatment my wife told me I was yelling in my sleep and asked me what was going on. It was a dream about meeting a bear that was going to charge me and I was yelling to scare it off. Even longer ago I did actually come face to face with two grizzly bears while hunting for moose. They backed off with no shots fired, but the event is probably well recorded in my brain. Fortunately I did not have a heart attack on the spot, but I'm sure I set some records for pulse rate! That said, it has not been any sort of reoccurring issue, and overall I do sleep much better now with a CPAP. My father in law developed Parkinson's later in life which can be related to this REM sleep disorder. He was never diagnosed or treated for apnea but in retrospect I'm sure he had it. He also had issues with circulation which I'm sure were the result of low level but long standing diabetes - also went untreated. He lasted into his 80's before passing due to heart failure.

Here is a link to the Mayo site which provides a little more patient friendly information on the disorder. Note there are tabs at the top for Diagnosis and Treatment, so it is not all on one page. They raise the potential treatment with melatonin and Clonazepam. Melatonin, I'm sure is fairly innocuous, but be very careful of the Clonazepam. It is a member of the Benzodiazepines class of drugs. They can cause or aggravate apnea, and worse still in combinations with opiods can cause death due to respiration failure (lethal apnea!). There is an article in our public broadcaster news currently about someone mixing those drugs and dying as a result. A link..

I hope that helps some. From your other posts I gather you are seeing a neurologist. That would be the right expert in this area. Just watch the drugs and the potential impact on apnea...

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Biguglygremlin +0 points · 7 months ago Original Poster Sleep Commentator

Yes I can imagine that a close encounter with bears would be memorable.

We have bears here too but unless you like climbing trees they are not so scary.

I suspect that it does take significant stress to break the lock the first time and it's good that you didn't make a habit of it.

I am still hoping that in my case it was stress related and not a disease process but I can't afford to ignore it even if that is the case because on it's own it has long reaching consequences.

The Mayo link was interesting and the link it led me to was even more so.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083495/

You would understand it more readily than I can but it seems to me that they decided the patient questionnaire was a waste of time and just went with the partner's questionnaire.

The same conclusions about credibility could be applied to Apnea patients.

https://www.mayoclinic.org/documents/msq-copyrightfinal-pdf/doc-20079462

One more to add to your collection Sierra if you don't have it already.

Should I post a copy to your wife? :)

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Sierra +0 points · 7 months ago Sleep Innovater

Very interesting questionnaire. Fortunately I don't take my guns to bed, so my nightmare bears are safe! About the only other issue I have had when I looked through the questions is the leg cramp thing. I still do get that from time to time. That I find very painful.

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Biguglygremlin +0 points · 6 months ago Original Poster Sleep Commentator

I guess RBD (REM Sleep Behaviour Disorder) isn't as prevalent, or well known, as I had expected.

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Ruby +0 points · 6 months ago Sleep Commentator

I have never heard of that and find it interesting. Which is probably not the word someone who suffers with it would use. I hope this is a temporary thing for you. Your point about the questionnaire for sleep apnea is a great one. Most that are used to help diagnose SA are simply not detailed enough. Having a partner's input would help a great deal.

I have posted on here about Restless Leg Syndrome to see how many suffer with it as well as SA but didn't get results either. Most people on here are just focused on having their questions answered and then they are gone. Understandable, but being a contributing part of the forum might really help someone else.

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Biguglygremlin +0 points · 6 months ago Original Poster Sleep Commentator

RBD is not that common Ruby and I don't think it's weight related so this forum is probably not the best place for discussions on movement disorders.

Unfortunately REM Sleep Behaviour Disorder rarely goes away. It is a degenerative disease that usually progresses to Parkinson's or dementia with lewy bodies.

As to forum function I haven't had much experience with forums and this is the first one I have involved myself in but it does seem that few forums focus on actually helping and educating in the way myapnea.org does atm.

Other forums seem more focused on airing grievances or sharing feelings, which have their roles, especially if you take the view (which I don't) that managing your own health and treatment is inappropriate.

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Ruby +0 points · 6 months ago Sleep Commentator

To me a forum consists of what is needed to help those who come to it. This forum seems to focus more on having questions answered about treatment options and that is great. However, I would hope that someone who is just needing support would feel comfortable about posting too. AND I hope would find that support. Each forum is different and I think this one is still evolving.

I also think (maybe I think too much!) that anything that affects sleep can be talked about on here. There is still so much that we don't know about sleep issues (of all kinds) and how they do or don't relate to each other. This website is about patient-centered research so maybe some discussion around different types of sleep issues will spark someone's interest and create a new research area. Then again, maybe not.

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Biguglygremlin +0 points · 6 months ago Original Poster Sleep Commentator

I didn't mean to imply that it was wrong to post other subjects here nor that I have any entitlement to have any say as to what is posted here because I am only a newbie and because I started this thread about RBD which is also not related to apnea and I've launched other subjects that are pretty much unrelated to everything! :O

That's because I've been taking your advice Ruby and talking about anything that might cause sleepless nights. There are sooooo many things to lose sleep over.

Like the state of the world and whatever happened to the good old days and how you just can't get good help anymore! :)

Then I could tell stories about my childhood, barefoot in the snow, or was it the cardboard box in the middle of the road? I get so confused! :( https://www.youtube.com/watch?v=_nL6isGPhzk

(please note that they had sleep problems back then too!)

On the subject of ancient history, I have had RLS myself since childhood and until recently just viewed it as one of life's eccentricities but I am fortunate that although it might be distracting and inconvenient and irritating to others (just sit still!) it rarely causes me serious pain as long as I stay away from electric blankets and polyester bedding and clothes dryers and plastic table cloths and nylon carpets and dry windy days and women brushing their long flowing hair on windy days and ............

You're right Ruby. It can be a real pain sometimes! :)

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Ruby +0 points · 6 months ago Sleep Commentator

I know you weren't implying anything about the forum! It does seem to be focused more on the medical side than the personal side and that's fine. It needs to be what patients need it to be. Does that even make sense? As for entitlement about saying anything? Don't be ridiculous. Your questions and comments are good. I'm glad you are a part of this. Everyone is a newbie at first. I appreciate the ones who hang around.

There are a lot of things to lose sleep over and how sad is that? Will we have enough hay to last through the winter? Maybe we should just build a wall around the government. (And that is the LAST and ONLY statement I will make about politics). When will my grandson finally get a tooth? Big things and small things that get big because we are sleep deprived.

The days when I walked five miles to school uphill both ways, barefoot in a snowstorm may be past but the more things change, sometimes the more they stay the same. What we don't understand we often make fun of, especially if it affects others and not ourselves. Soap under the sheets for RLS has absolutely no scientific reasoning behind it and while it never worked for me, some swear by it. Who am I to judge differently?

I think I am rambling here. Sinus infection and afib acting up has me not quite all here. However, I do want you to know that I value your posts and love your humor--for me laughing is therapeutic!

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kmurphy831 +0 points · 6 months ago

Hi Ruby, I have been living with rls for 16 years and could not go a day without Mirapex to handle it. I have been diagnosed with severe OSA and last year, was implanted with the INSPIRE device.

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Biguglygremlin +0 points · 6 months ago Original Poster Sleep Commentator

Hello kmurphy831,

What do you think of the implant process and the Inspire device and function?

Would you recommend it for others and if so up to what level of OSA?

Did you pay for it out of your own pocket or what motivated your insurance to shell out that much money?

I expect we will hear a lot more about these devices over time but you are the first I have had contact with who has personal experience with an apnea implant device.

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Sierra +0 points · 6 months ago Sleep Innovater

Here is a news article that discusses the issues with CPAP compliance, and some alternatives. There is brief section on the Inspire implant. Some have had adverse reactions to it, and have had to get it removed. Other say it is great. The company says adverse reactions are rare...

New Ways to Conquer Sleep Apnea

You have to feel sorry for the lady that took 7 years to find a mask that worked for her. Said that she used a spreadsheet to track the 26 different mask styles so she did not test the same one twice. Let me see, mask 6 for me in 9 months. At this rate I may be at mask #56 in 7 years...

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Biguglygremlin +0 points · 6 months ago Original Poster Sleep Commentator

Talking about masks has it arrived yet and does it work?

Yes you still have a ways to go Sierra but I notice you have become a Sleep Innovater so maybe you can find a working mask in as little as 6 years now. :P

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Sierra +0 points · 6 months ago Sleep Innovater

No mask yet. Our Canadian postal system has it in safe storage for me... The computer says it got to our city last night, so perhaps another 3-4 days and they will decide to deliver it, instead of storing it. They got legislated back to work, so they are in no real big hurry these days.

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Ruby +0 points · 6 months ago Sleep Commentator

RLS is one of the most misunderstood disorder ever. There are still a lot of people out there who think it is a hoax. Let them suffer through just one night of this misery and their thoughts would change. There doesn't seem to be a lot of information out about the relationship, if any, between SA and RLS but it seems there might be a lot of people who suffer with both. I also take Mirapex and most of the time it works.

How is the Inspire device working? Like Gremlin, I would like your thoughts on it.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

I took a plane trip recently for the first time in a year or more and had a really bad bout of RLS that was way beyond what I could block or ignore and I've had numerous episodes since.

For the whole of my life I've ignored it because I could just block it but now I can't, so what can I do about it?

Are there any meds or tricks that I can use?

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jeffez +0 points · 4 months ago

RLS - Google "rls treatment". Under the "People also ask" there are lots of options to consider. I have a friend who put a bar of soap under her sheets and it stopped her night time problems. Worth a try.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

I think I'd be uncomfortable with a bar of soap under the sheets on my bed.

Does that make me royalty or does it only apply to legumes? :)

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jeffez +0 points · 4 months ago

Try a small bar beyond your feet, you ninny. Maybe freebie hotel size. LOL

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

I've always wanted a bar at the foot of the bed but the wife won't let me. :(

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Ruby +0 points · 4 months ago Sleep Commentator

There is no scientific evidence that shows any reason this might work, your highness. But I know people who swear by it so there it is. Your majesty, there are medications that can help as well as lifestyle changes. On long trips you can try using an exercise band to stretch leg muscles, your omnipotence. As lacking as sleep apnea treatment is, it's even worse for RLS.

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

Sorry, was off trying to find my sceptre.

Yes We have read that there is no diagnostic process hence there is no disease.

So how do We manage these delusions?

Do you reckon a bottle of body wash under the sheets would do the trick?

Maybe We should wrap it in copper coils and decorate it with magnets just to be sure?

If this cure depends on faith We may need every advantage We can get. :(

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Ruby +0 points · 4 months ago Sleep Commentator

Things to avoid--caffeine later in the day, alcohol (wine for me), antihistimines. Some people can't tolerate flour or sugar. If you are on medication, take it the same time every day. Don't lay in bed agonizing--get up and do something boring or walk for awhile. Sometimes just getting up to go to the bathroom can break the cycle. There are medications available but they don't all work for everyone. It gets very frustrating to deal with and for some people it is bad enough that they have suicidal thoughts. Sleep apnea is horrible but at least it is medically accepted and they are treatment options available. Having to wear a mask is nothing compared to that horrible need to move. Hope you found your sceptre. Does your crown match?

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Biguglygremlin +0 points · 4 months ago Original Poster Sleep Commentator

Well they used to be a matching pair, pure gold of course, but the crown is now all rusty and the sceptre has gone a sickly shade of green. They just don't make crowns like they used to. :(

I've been reducing caffeine and alcohol for a while now and don't hesitate to get out of bed when not sleeping. I can usually get back to sleep easily enough. I think it bothers me more during the day.

I'm hoping that I can get all the ignore and block files up and running again.

I rarely consider exit options because there is still too much to do and people depending on me but there are times when I have been desperate for a temporary escape, a knock out pill of some kind.

Anyways life is a precious thing and worth the experience, both good and bad.

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Ruby +0 points · 4 months ago Sleep Commentator

So, does it bother you during the day while sitting still? I have had some issues with that in the afternoon so I take a small dose of my medication around noon and that helps. But there are times when nothing helps and that feeling of depression and anxiety I get with it just sucks. Life is precious, you are so right. I'm a firm believer in learning from those experiences and the people I meet along the way.

Happy to send you some tarnish remover. My ruby slippers sometimes lose their shine so I always have some on hand.

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Biguglygremlin +0 points · 3 months ago Original Poster Sleep Commentator

last night I was fighting for my life, and almost died, because of a tangled air hose.

The irony of the situation is that I'm not sure if it was a curse or a blessing.

Let me rewind back to the beginning.

Once upon a time in a far off kingdom.

There was a monster.

I'm not sure that I can even describe it properly so suffice to say it was dangerous but not particularly scary.

It crept up on me and attacked so I disposed of it.

But as we all know, monsters rarely travel alone and sure enough, there was another monster and this time I saw it coming and that's where my problems really started.

I found that I couldn't move into a proper defense position.

Even so it was just one and not that scary so I dealt with that one too. No hassles. I've dealt with monsters before.

It was no surprise when the third attacked but still I was disadvantaged, by having to allow it to be right on top of me before I could destroy it, because I couldn't move forward or even sit forward to defend myself.

I knew, as you do, that they would keep coming and realized that inevitably they would get meaner and more numerous.

It would only be a matter of time before I had to deal with more than one at a time and I may be good but I'm not that good.

There was no way I could hope to survive while I was restrained in this way.

So I devised a desperate strategy to gather them together, in the hopes they would attack each other, and while they were distracted I made my escape.

Only to find, on waking, that I couldn't sit up because my air hose had tangled itself around the bedhead.

Now I might not be the sharpest sandwich at the picnic but I'm not a total idiot.

I know that nobody wants to read about my dreams.

So what is the point of this?

The point is that the tangled CPAP air hose worked!

Yes it nearly got me killed in that other reality, but it saved me from breaking something or somebody in what we refer to as the real world.

It seems to me that the dream state is a fragile structure with the brain struggling to process a complex mix of reality and illusion.

So how did the restraint offered by a nasal pillows mask and air hose, which is fairly tentative, manage to restrain my RBD movements?

It certainly surprise me because that gear falls off or falls apart of it's own accord without provocation.

Obviously the CPAP system wasn't designed to be used as a leash although it may well feel that way.

So what does it all mean? Where do we go from here?

Could a pretty pink collar and chain, securely shackled to the bedpost, become the latest craze for RBD sufferers? :O

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Ruby +0 points · 3 months ago Sleep Commentator

Could a pretty pink collar and chain, securely shackled to the bedpost, become the latest craze for RBD sufferers? :O

Once upon a time, on an idyllic farm, the farmer's wife discovered that she was no longer as energetic or upbeat as was her wont. She took the horse and buggy to town to talk to her doctor. The doctor made her go to a "sleep clinic" for a "sleep study" where she spent the night being tortured by NOT sleeping. She was told that she had a strange disease that could only be helped by wearing a butt-ugly mask attached to a machine that spit out air into her face all night long. She cried. She kicked and screamed. "How, o how can I wear this thing to bed night after night? My husband will turn away in disgust!" Again she cried, this time into a phone to her friend. Her friend (a southern Princess in disguise) told her that she needed to think about her future if she did not use the machine. It might be a short one. As for the mask--"Why, darlin'! Just take that little ol' mask, add some sequins and feathers, wrap that ol' hose in Mardi Gras beads and sleep tight. You won't be using the dog-gone thing during "special times" anyway, bless your little heart." The farmer's wife did just that and they lived happily ever after. Mostly.

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4ntwenty +0 points · 2 months ago

I don't think sequins and feathers would work for me. :)

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kitty +0 points · about 2 months ago

I have RBD. Since i was very young I remember waking up from dreams screaming. I would 'scream myself out of it.' the screaming, punching, flailing were signals for my body to leave the dream because the dream often became so threatening that waking myself up felt like a defense mechanism (this is what i think at least). As a young adult, many bedpartners have told me that I scream in my sleep, kick, and punch and other invasive things. Recently I had a dream that i was choking on tomatoes, and was trying to claw the tomatos out of my mouth, in the dream i was suffocating and couldn't breathe. I woke up and found out that i had been violently choking myself all night using my pillow and my arms were sore all day from squeezing the pillow around my neck so hard. i had literally been suffocating myself. This was terrifying. I am nervous about actually killing myself in my sleep.

Weirdly, my brother also has experienced these things. I remember as a child when we shared a room he would scream and talk loudly in his sleep. He even once told me about having a dream where he was running all night long and when he woke up realized he had been running in bed. Since we shared a room growing up I thought this behavior was normal until bed partners assured me that it was not. My brother has since grown out of it, but mine has gotten worse.

I am a 22 year old female, I rarely drink and am not withdrawing from drugs. had several head injuries as a child requiring surgery but that doesnt explain my very healthy brother having RBD as well. There is no parkinsons in my family. I am really at a loss for how to solve this.

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Biguglygremlin +0 points · about 2 months ago Original Poster Sleep Commentator

Hi kitty

Thank you so much for your post.

How did you manage to find this thread?

I had more or less given up finding any meaningful responses from people with RBD.

I am sorry that you have to deal with these things at such an early age.

It's interesting that you too have linked the head injury to childhood 'nocturnal epilepsy' and RBD.

The only theory I can offer is that we are all unique and perhaps the disposition towards childhood nocturnal disturbances is genetic but most children grow out of them.

I think it takes a particular type of trigger or injury to cause long term damage that leads to RBD as an adult.

It also seems (hopefully) that if the damage has a physical cause (like head injury) then it is not the same thing as the disease process which starts at the base of the brain and eventually causes Parkinson's Disease.

I also had a head injury as a young child followed by violent nocturnal episodes.

I managed to stop the episodes for many years although something like Periodic Limb Movement Disorder continued through the decades until I was in my 50s and I started launching myself out of bed. The Longest Sentence

I am certainly not qualified to offer any advice on your circumstances kitty other than that it is virtually impossible to die by choking yourself but if your actions are violent enough you need a safe environment to sleep in without dangerous objects nearby.

A partner who enjoys rough and tumble in the early hours would be a definite advantage too. :)

Have you consulted any specialists or tried any medications?

If so I'd love to hear what they advised or if they worked.

Please be advised that these posts may contain sensitive material or unsolicited medical advice. MyApnea does not endorse the content of these posts. The information provided on this site is not intended nor recommended as a substitute for advice from a health care professional who has evaluated you.