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?
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...
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? :)
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.
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.
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.
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! :)
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!
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.
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.
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...
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.
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?
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.
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.
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. :(
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?
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.
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.
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
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.
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.
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.
I was diagnosed with RBD in 2011 age 49. My dream enactments started slowly about 4 years prior to diagnosis.
My dream enactments are under control with 2 mg of Clonazepam at bedtime and 10 mg slow-release melatonin.
I experimented using various dosages of both treatments off & on over the first 3-4 years before convincing myself that I need to stay with the dosage to avoid breakthroughs. Alcohol and extreme fatigue can both trigger a dream enactment while medicated.
Suggest participating in clinical studies to better understand RBD and the long-term risk. See: naps-rbd.org.
I was diagnosed with RBD in 2011 at age 49, although I recall vivid dream enactments starting in 2007 a few times per month. The symptoms are under control with medication (2 mg clonazepam and 10 mg-controlled release melatonin). I experimented for a few years modifying doses. Need the clonazepam, break through with active dreams taking less than 2 mg at bedtime. RBD still not that well known, although there is lot more information than 10 years ago. Check out naps-rbd.org for more details and consider participating in the Clinical Study.
Thanks for your input RayRBD
So you've had RBD for quite a while now.
Silly though it may seem I decided to try and avoid Clonazepam for as long as possible. Not even sure why now.
I am using Dexamphetamine at the moment, when I go to bed, which comes with it's own perils but, for me 'better the devil you know ........'
I have no problem getting to sleep but I have used Melatonin at varying dosages over recent years hoping to reduce the RBD. The effect has been consistently detrimental for me. I understand that for most RBD sufferers it does have benefit.
The more people I share my story, the more unique everyone's experience is...no two alike. I see you are very active on this site and have been sharing your story. There are downsides to Clonazepam, although I need my sleep. Even taking 2 mg. at bedtime with 10 mg of melatonin, I still breakthrough occasionally. Just last night I woke up after kicking a guy during a fight to get away. At least I don't throw myself out of bed or injure my wife and generally quickly return to sleep - although retaining a vivid memory of my enactment.
It took me several years of experimenting with different dosages & combinations while managing CPAP for Obstructive Sleep Apnea. Even trying to sleep without medication. It's like a switch, I have an active dream when dropping below 1 mg. Clonazepam.
I like hearing other peoples experiences and I like telling stories. They bring the semblance of reality to a world of illusion but, for me, they are all just aspects of chaos, an attempt to create order where there is none.
It's a dangerous way to see the world and perhaps a degenerative process in itself but I love obscure concepts and I like conundrums. I guess that's why I choose to see life this way and why I find it so fascinating. I'm aware that many of my views dance on the edge of depression but dancing on the edge is what I do in every direction. It's how I chart my universe.
Back to more mundane things, it seems that a significant contributor to many sleep disorders is stress and perhaps that is especially true of RBD. It amuses me that all these things cycle around, cause an effect ..... affect a cause, stress impairs sleep ..... impaired sleep fuels stress. One thing triggers the next and they spiral out of control. By the time we are fully committed to 'fix' something we are in the middle of a cyclone trying to stop a single sheet of iron driven by a spectrum of associated forces.
What I could use is more cheats. More ways to calm the storm, more ways to create order amongst chaos, more ways to strengthen the remaining structures. Medication is helpful for a while and I will try Clonazepam one day, but perhaps meditation or relaxation techniques could have a more enduring impact, or are there more specific specialties or therapies for dreams?
Now I feel like that damaged robot from Short Circuit. "More input!"
Cause & Effect - do loops, makes anyone dizzy and leads to anxiety for many. You referred to a degenerative process....which is where RBD leads most people eventually. The more I learned about RBD, I had a strong urge to do something...anything... which has taken me down the research path. With 4 grandchildren, if I can leave a legacy of contributing to better understanding RBD and the neurodegenerative process that leads to a treatment to slow and even stop the degenerative process, I'll leave a better world. At least I showed up, which is half the battle....
It is a worthwhile path to choose RayRBD and one that should provide a sense of purpose as well as some insights. Do they do much beyond gather data? Are they pursuing any good prospects yet? Have they been able to demonstrate any improvements? What therapies seem to have the most potential? Are there new links that we have not heard about? Are there better methods of diagnosis? There are too many questions. Where are the answers?
Yes - a lot of questions and so few answers...yet. They do share information to a degree, nothing that I should write about on this forum but could share off-line. The consistent advice, which is no surprise is to get lots of exercise, eat healthy (plant based diet) and avoid anxiety - be more chilled and stay positive. I am off my highest weight when I traveled a lot in the 1990-2000's and this year am staying below 200 lbs. - determined to slowly loose more so I can keep it off.
I started participating in clinical studies in NYC in 2016 and in Boston 2018. Check out naps-rbd.org for the research site and consider participating at 1 of the 10 research centers around the US & Canada if you can. The web site has been adding more content and resources for inquiring minds like yours. NAPS 2.0 is recruiting more RB patients with $M35 funds awarded in 2021. I gather that you are aware of the "discovery" of RBD in 1986 credited to Dr. Carlos Schenk of Mayo Clinic in MN. We are very valuable candidates for clinical research in the prodromal stage for finding a treatment for use in clinical studies. I'll be signing up once a promising treatment passes to go into clinical trials.
The Parkinson's Progression Markers Initiative (PPMI) is the largest clinical study that I am aware of that includes RBD. You could participate on-line without taking the next step traveling to a center for the clinical studies.
This is a great dialogue, although I cannot keep up with this pace as part of my efforts to chill....I'll commit to posting 2-3 times a month. Stay positive & keep the faith....not everyone with RBD will convert, maybe we will be the lucky 10-15% that don't.... or pass on from some other health condition or accident.
What have you learned that could help RBD patients deal with this chronic condition? Any tips to pass on would be helpful.
You've been a big help RayRBD in more ways than you know and it is appreciated.
It seems to me that what you bring to a discussion, that has the most profound benefit, is a sensible attitude and awareness of the larger picture.
Go spend time with the grandchildren. Young people are the most powerful therapy available. They are the reason for my continuing existence and the source of my sanity.
As to your admonition above, I came here to ask questions, not to impose my distorted reality on others, but maybe I will venture into that domain one day just for fun. :)
