Rem Sleep Disorder

Edit: I've come to realize that parasomnias or rem sleep disorder can cause many arousals that the xpap machine may record as legitimate breathing events. The machine can't tell if you are asleep or awake. The recording of so many false events can make it appear that one has apnea if you go by those flagged events and ahi numbers. Learning to interpret the flow rate graph in Oscar told a completely different story in my case. Read on to see how I came to that conclusion.




I've been part of this forum for a number of years and it has helped tremendously. I have another thread going that has progressed into a completely different direction from where it started and seems to have reached a dead end. Seems very few people have experience with rem sleep disorder and I would like to get some new eyes on the subject so I started a new thread. This link is for my old thread.
viewtopic/t179223/Thought-I-had-back-sl ... order.html

Has anyone dealt with rem sleep behavior disorder(RSBD)? I'm doing things in my sleep 30-50 times per night that I don't remember in the morning. These arousals seem to mostly correlate with certain stages of sleep. Likely the light sleep and rem stages according to my sleep study. Nothing violent yet, but adjusting limbs, blanks, xpap mask, turning over in bed. Also moving body arms and legs during dreams. I have it all on video and I only remember a small fraction of it in the morning. Obviously I feel terrible every day.

My apnea is well controlled. In fact I'm starting to wonder if I even have it or have it anymore after a tumor blocking 3/4 of my throat and airway was removed. The Ear Nose Throat doc thought is was a good chance my apnea would have been resolved. After recently studying my flow rate and breathing patterns in Oscar I'm realizing that probably all my flagged events are false and can be categorized as sleep wake junk. To me it looks like this may have been the main problem since the beginning from looking at my machine data. Maybe a misdiagnoses from the very beginning, but maybe not.

I think the right path would be to talk to a good sleep medicine doc about another sleep study and RSBD testing and treatment. I've spent many thousands on doctors with no results. I started doing my homework ahead of time but I'm struggling to figure out how to find a doc that is good at treating RSBD. I'm also not finding a good internet forum to discuss this disorder with people.

I would very much appreciate any insight into RSBD, how to go about finding a doctor in my area that is good at diagnosing and treating it and finding a support forum for the disorder so I can hopefully have a normal life again. Talking to my insurance company, they were only able to give me the same list of sleep medicine doctors that is on their website. I found no details of who is good at what. That route was a dead end.

Thanks so much everyone for all the help, past, present and future. Take care.

Rob K wrote: ↑

Thu Dec 17, 2020 2:43 pm

In fact I'm starting to wonder if I even have it or have it anymore after a tumor blocking 3/4 of my throat and airway was removed. The Ear Nose Throat doc thought is was a good chance my apnea would have been resolved. After recently studying my flow rate and breathing patterns in Oscar I'm realizing that probably all my flagged events are false and can be categorized as sleep wake junk. To me it looks like this may have been the main problem since the beginning from looking at my machine data. Maybe a misdiagnoses from the very beginning, but maybe not.

I can't help with RBSD except to say how about another sleep study?

For now, have you thought about dropping your pressure settings a notch per night and watching what happens? Assuming you were diagnosed with OSA, if you get the pressure way down and obstructive events don't crop up, I would surely have another in-lab sleep study.

Yes I already started decreasing pressure after I figured out most of my flagged events are false. Will keep bumping it down and see how things go.

I'm at a loss right now trying to find a doc that is good with RSBD and finding a forum.

My husband was acting out in sleep and he did a sleep study as I woke up with him punching me. He was devastated as that was so out of character for him. I thought it was OSA and even as a RN, I did not know about RBD. Sleep medicine is not something that I have dealt with in my 40 yr career and it was given a light touch in school with basic sleep cycles covered etc.

As I'm sure you have researched RBD in that it allows muscle movement so you can act on your dreams vs the usual paralysis of muscles that occurs in non RBD sleepers. He was dreaming/having a nightmare and thought someone was trying to steal my pocketbook. He was trying to protect me and punch them.

He was diagnosed with OSA and used an oral appliance, but also the in lab study showed RBD. That was treated initially with melatonin and then we moved to clonazepam which helped. He ultimately developed other issues but the RBD was treated successfully in my opinion.

Have a talk with the doctor as RBD can be really dangerous to you and not only to sleep partners. He once woke up swung around knocked a lamp over and punched a hole in the sheetrock near the bed. Had he went my direction instead or fallen and hit his head, it could have been bad.

We eventually had to sleep in different beds as the potential for injury to me was too great and we made his immediate bedside area safer with some modifications.

Wishing you well,
Dorothy

what drugs are you on? we went too high with my cymbalta i had similar reactions. we dropped the dose back down and all that stuff went away. I seriously think you need to see a neurologist. a neurologist should know what is causing this and how to control it. i just don't think it's an apnea treatment problem.

dp135 wrote: ↑

Fri Dec 18, 2020 7:07 pm

in lab study showed RBD. That was treated initially with melatonin and then we moved to clonazepam which helped.

I had done some search of the major clinical sites, and the only things they mention that have results are melatonin and clonazepam. One site recommends trying melatonin first and if that doesn't work, proceed to clonazepam. For both drugs, it can be difficult to find the optimal dose. Start with a low dose and increase if not effective.

Not taking any drugs other than D3 and occasional melatonin. I've read about melatonin and clonazepam for treating RSBD. I don't like drugs and go back and forth with 5mg of melatonin even though it doesn't seem to do anything, 10mg doesn't do anything either. They will help me to get to sleep quick but do not seem to have any effect through the night. In the past I had some ambien and tried 5mg a couple times and 10mg once. Those did the same as melatonin. Got to sleep quick but had no noticeable affect during the night. I know this for certain since I have a body position monitor and video that I use every night. The body position monitor maps out all my activity through the night which paints a clear picture how active I am. I review the video once in a great while just to confirm.

This is a typical night with around 30-50 arrousals. Doing things like adjusting body position and limbs, adjusting bedding and getting untangled, adjusting my mask, limb twitching and jerking, sometimes body movements from bad dreams. Nothing violent yet. The majority of it I don't even know I it happened when I wake up. I'm single so this has eluded me for years until I got video footage. It's really bizarre that a person can do doing things all night while they are asleep. Anyway I know what's happening now, just need to find a support group and a good doctor. Probably not easy since this stuff is pretty rare.

I'm pretty certain also it is not an apnea problem. I believe your right, neurology with experience in sleep medicine. Will need to find someone or somewhere that deals with both. I've seen a neurologist when I first started feeling bad but that didn't go anywhere. Will be better now that I know what is really going on. Next I found I had sleep apnea, but the machine hasn't seemed to do much for me over the last 7 years. I'm pretty certain it's because the doctors never got to the root of the problem, RSBD. Even my sleep studies showed many spontaneous arrousals with 10mg dose of ambien. The doctors never mentioned them so I think they did not know what they were dealing with.

We went to a sleep doctor who is a pulmonologist. When RBD wss diagnosed we were referred to a neurologist who specialized in movement disorders. She managed his RBD
As well as some other ssues that were starting.

Google Mike Birbiglia and "Sleepwalk With Me".
Perspective from a fellow sufferer.

I'll check out that video. I'm not sleep walking or getting out of bed but definitely doing stuff in bed and a lot of it. Anyone know what the dosages are for melatonin? I'll research that, maybe I'm not taking enough to have an affect.

Edit: Sounds like 6-12mg is a high dose for RSBD. I tried 10mg of time release in the past and that didn't seem to do anything other than cause me to get to sleep quicker. Didn't seem to do anything for arrousals. So definitely need to be finding a new doc.

Also actively decreasing my machine pressure. Have decreased by 2cm this week and seen no change in AHI, still around 1 or less. I think I ended up with to high of a pressure because I was trying to compensate for false events. I noticed the machine keeps ramping up the pressure to compensate for false events. Thinking I maybe should decrease the max pressure or go to a single pressure.

Rob K wrote: ↑

Sun Dec 20, 2020 8:22 pm

Thinking I maybe should decrease the max pressure or go to a single pressure.

You probably know that some highly experienced people will give you comments if you post an OSCAR daily screenshot in this thread.

Yes I know. I was thinking out loud there. lol I know what to do, I just need to keep working my way down with the pressure for a bit. If I start seeing flagged events that look legit than I need to stop. I would post a screenshot but people would need to look at the flow rate details for the whole night and that's a pretty tedious thing to post. A brief snapshot won't show what's really going on. I can say that it has really been a tremendous breakthrough and blessing to have the opportunity and resources on this forum for people to take charge of their therapy. Learning to interpret the flow rate chart and comparing that to video has really opened my eyes to the differences between asleep and awake breathing patterns. For me it was learning that the machine doesn't know if your awake or asleep and also learning that pretty much all my flagged events are false. Up until a few months ago it was a pretty big mystery. That said I'll gladly post anything you like at far as data goes.

Here's an Oscar screenshot. I also have Oscar set to show events less than 10 seconds, I set it to show events between 8-10 seconds long which are shown as UF1 & UF2 flags. All the flags for this night are SWJ. All those flags are from "activity" for lack of better words. I could call many of them false flags from awake breathing but that doesn't tell the whole truth. How do you describe awake behavior without actually being conscious. It's so bizarre. lol

If you look at the flow rate you can see large spikes where I'm definitely active. Also any flag can be viewed as active. Flags are mostly clustered though the night in those periods of erratic breathing. Those are my light sleep and rem stages and that's where much activity is happening, confirmed by video.

I also included the Somnopose body position graph from the phone app to show activity. The graph in the phone app is easier to read and interpret compared to the orientation graph in Oscar. In Oscar it's hard to make out minor arm or leg movements. I could make the graph larger but then the rest of the data would not be visible on the screen. I've studied the Somnopose graphs enough that I can tell pretty well what I'm doing at the time based on the size of the movement or shift in position.

Hopefully people can learn something from these charts and maybe it will help them understand better what things look like when your awake or in my case being awake without being conscious.