Thought I had back sleeping problem but turns out it's rem sleep disorder

[Rob K]

You were right, a fair amount of toe flexing, toe twitching. Occasional foot, leg, head or body twitch. The toe and foot twitching is most prevalent in what is likely rem sleep. Those blocks of time that are somewhat spaced out every 1 to 1.5 hrs apart which appear to get longer toward morning. There is a lot of activity during those times. Eyes moving a bunch, toes moving a bunch, occasionally bigger limb movement, in and out of sleep frequently, breathing is very erratic, a bunch of 8-10 second breathing events that Oscar shows but thinking the apap doesn't adjust for.

My sleep study shows breathing events 6 times worse during rem stage so I feel pretty good about calling those rem stages. Everything seems to point toward a rem stage problem or at least that stage appears to be a major contributor.

This is interesting. Looking at sleep study flagged events; shows many arousals during stage 2 sleep and rem stage, more so during rem. And titration doesn't seem to change the amount and frequency of arousals; actually probably more with tiration. Movements contributed to 1.9% of arousals before tiration and 1.9% with titration. Breathing events contributed to 39.6% of arousals before titration and 1.9% with tiration. So movement and breathing arousals are low during titration, but there still are a ton of arousals and the data does not say what caused them. Would those be classified a spontaneous arousals? Sure wish the data said what they were.

[Pugsy]

So movement and breathing arousals are low during titration, but there still are a ton of arousals and the data does not say what caused them. Would those be classified a spontaneous arousals? Sure wish the data said what they were.

2 kinds of arousals...breathing related and spontaneous which of course means no known cause.
So if an arousal isn't breathing related it gets dumped in the spontaneous basket.
So if a person has 40 arousals noted and 2 noted as breathing or airway related...by default the other 38 will go in the spontaneous basket...

Unfortunately there is no way to know for sure what is causing a spontaneous arousal unless during the sleep study the tech notices some outside factor that could explain the arousal happening at the same time. Like maybe a train whistle or loud door slam or something.
Or obvious limb movement....then it would be mentioned in some fashion and since arousals related to limb movement are low...goes back into the spontaneous basket.

The bulk of your arousals are likely in the spontaneous basket. That sucks because figuring out what is causing them isn't easy and even if we can figure out the cause it isn't always easy to fix them. I speak from personal experience in that regard.

[kteague]

On the toe flexes or twitches, the timing between them could hold a clue as to if they are random or periodic. However, if one is still having respiratory events, it can be hard to establish a movement pattern due to the interference of breathing arousals. Were you using CPAP during your video? Based on personal experience, it was only after effectively resolving my sleep apnea then getting lab tested while using my CPAP at it's proven effective pressure all night (not a titration) that I got a good picture of the degree of disruption my limb movements were having on my sleep architecture. Not always easy to get a doctor to agree to that as it's just a little out of the box. btw, periodic limb movements during REM aren't what is usually seen. Can happen, but I think more often those are respiratory related or movement with a spontaneous arousal. Without the brain being wired, so much is left to (mis)interpretation.

[Rob K]

Pugsy, the data from my sleep study is from 5 years ago. Things certainly could have changed since then, but... while titrated it showed a ton of what must be spontaneous arousals since most of them were not breathing or movement related. Thanks for clearing that up. What insight or suggestions do you have on trying to nail down spontaneous arousals? Sounds like you may have some experience.

Kteague, I use my apap at all times when sleeping. I'll look a little closer for patterns, but reflecting back the movements seemed random. Out of the box or not that's probably what needs to be done. Another night in the lab using my machine and settings to figure out what's going on. I'll do as much at home as I can though. I would rather figure out a well studied and thought out solution as opposed to going in the medical system which has very little time for me and more than likely will quickly put me on meds, often ones that are not needed which has been my experience.

For sure I get blocks of time where I'm very active, a lot of eye movement, a fair amount of limb movement, in and out of sleep a lot, erratic breathing. Outside those blocks of time all those things are fairly quite in comparison.

My sleep study shows the majority of PLM's during stage 3 deep sleep. And the majority of breathing arousals during stage 2 and predominantly rem.

I apologize if I get redundant. It's sort of my process to keep things fresh as I filter through a ton of info. Crap there's so much to learn and figure out. Good stuff to know though and very very glad to have the help of those with some experience. Thanks so much.

Last night 6 hours of sleep and according to Somnopose chart I woke probably 25-30 times. It's been great to have video to compare to Somnopose because it shows that most of those position changes, even the majority of the small spikes are wake ups.

[Pugsy]

What insight or suggestions do you have on trying to nail down spontaneous arousals? Sounds like you may have some experience.

Unless you know of something going on that might be the cause of the arousals it's damn near impossible to figure out.
Yes...I have some experience and some extra experience recently.
In my case I know the cause...I am 68 years old and my back and pelvis are f....d up (bad arthritis, scoliosis and no disc space between the vertebrae) and it hurts and the pain causes the spontaneous arousals. Hard to fix because pain meds wear off after about 4 hours then I wake up a lot tossing and turning trying to figure out a position that doesn't hurt...I have had this for a long time. Now recently we add life stressors into the mix. My mother is failing right in front of my eyes and if she is still here Christmas I will be surprised.

It's not easy to figure out what might be causing spontaneous arousals if you can't lay your finger on a possible cause.
And sometimes even when we know the cause it's not so easy to fix it. I recently in July tried a different medication to maybe help with the pain but the medication side effects were horrid.

Sleep studies show the spontaneous arousals but they can't show the cause. They just show they happened. They can't see inside the brain to show what caused it. It's just not that easy. Some people are just "light" sleepers and wake up from the least little thing that is bugging the brain.

Medication side effects are sometimes the cause which is why I ask the "what meds, even OTC might you be taking"....it's a common cause for some people but of course not all people.
Other health conditions...both physical and mental...can be a cause.
And sometimes we just can't pin point a cause.
It's why I tell people to take an OTC sleep aid if they can and/or talk to their doctor about maybe adding meds. There's a time and place for sleep aids. I add plain Benadryl to help me out sometimes....and I also have RX Ambien to help me out as well but that's reserved for sort of emergency use. When I have had several bad nights and I know I have to get a night with some decent sleep. I don't like it as it comes with a nasty hangover kind of effect the next day for me...plus it is potentially habit forming and I want to avoid that if at all possible. It does help me sleep a little "deeper" and thus less arousals but it comes with baggage.

I prefer to try to fix the cause...like the pain but that's not so easy either. That's why I tried a different med in July at bedtime for pain that works differently than the codone stuff...but the side effects were unacceptable baggage. I quit it after 2 weeks. Nausea, zombie and I couldn't tell it helped the sleep anyway.

[Rob K]

Jeez Pugsy, that's a lot to deal with. If I could send a hug through the internet, I'd do it. Thank you for the detailed response.

I don't take any meds other than some vitamin D. These days I don't normally need it but I have taken melatonin from time to time which will make me a little drowsy and get to sleep quicker. Even a 10mg dose seems to only work for an hour or so. It never helped me stay asleep. I do have some emergency Ambien and rarely do I take it. It will knock me out quicker than meletonin, but it doesn't help any to keep me asleep, at least not that I noticed. Whatever is causing arousals it persists even with those sleep meds.

I don't have any problems getting to sleep, I'm out quickly. Staying asleep is the problem. Some life stresses will sometimes keep me up but I reduced most of that over the last few years. It had gotten bad so I pretty much didn't have a choice but to make the changes. I've been though insomnia classes and read books about sleep. My sleeping environment and my routine is fine tuned. Of course I'm not perfect and slip up occasionally. Sometimes on purpose to keep life interesting.

I'm really stumped on all these wake ups. It's very consistent every night which I'm now pretty certain has been happening for like a decade. I'm now realizing they show up on my sleep study also. I do have some nerve, muscle and joint pain. I've done a lot of physical labor for quite a few years. That said if I ever get 10-11 hours of sleep in a night I feel amazing with no pain. Thus I'm pretty sure most of the aches and pains are from years of sleep deprivation and not getting adequate rest each night.

[Pugsy]

Sleep maintenance insomnia...that's when we don't really have trouble falling asleep but either wake up too early or frequently during the night and the list of potential causes is miles long. So we have trouble "maintaining sleep".
Arousals mess with the sleep cycle and keep us from maintaining good sleep. We may or may not remember arousals. I always see a lot more on my flow rate graph than I remember and I usually remember at least a half a dozen.

[Rob K]

Made a big discovery this weekend or at least I confirmed that I likely have had the same problem for a decade.

While watching video footage I can write down the time and what I was doing during each arousal onto a printed Somnopose chart. So I mapped out a timeline for the entire night. Using the timeline I compared that to the flow rate chart in Oscar. That made it much more clear as to what was going in the flow rate chart. What I came to realize is that probably most of the flagged 10 second events and the 8-10 seconds events are false. The majority of flagged events and erratic breathing are sleep wake junk from going in and out of sleep so much.

Next I looked at some old data from when I first started using the machine. Things look very much the same as they do now. Large blocks of time through the night with clustering of events, erratic breathing and what looks to be a bunch of arousals. AHI was a little higher back then, but the pressure was lower and I had a different machine and didn't have a good fitting mask. Attached some data from when I started. Looks very similar to now.

Also given that tons of arousals show in my sleep study that were not documented as movement or breathing related the same problem is evident there as well.

That pretty much seals the deal for me, I've had the same problem this whole time even before my first sleep study. That also explains why the machine has helped, but only marginally. It took care of some breathing arousals but most are not breathing related.

[Rob K]

Now to figure out what has been the cause. I've had classes and read books on sleep maintenance. You become quite familiar with that subject over the years as you struggle to get a better nights sleep. I believe I'm doing everything right as far as maintenance goes and I really don't see how I can improve more in that area. To be so consistent for so long I suspect this will turn out to be a chemical or neurological problem in the end, much like rem sleep disorder. I think my studies will be heading in that direction.

[zonker]

Now to figure out what has been the cause.

interesting. you're to be commended for diligently working on this. hope you have good luck.

and please keep us updated.

[Rob K]

I really don't have a choice, I feel so awful most days. Definitely will be updated. I use my threads to keep track of all the information that I've been processing. Also need to bounce ideas off of people and hopefully get steered in the right direction. I'm so thankful people will take time to read them once in a while. There's so many people here with more or different experiences. This place is a life saver.

For anyone studying flow rate charts and trying to understand what they are seeing I would highly recommend video and mapping out a timeline of your arousals. That made a world of difference on understanding and how I view those waveforms. It really opened my eyes to a lot of sleep wake junk

[Rob K]

Have been busy with many other things in life. Still feel pretty bad and doing things in my sleep all night that I don't remember in the morning. Still consistent with about 30-50 arousals per night.

I'm looking into finding a new sleep medicine doctor. I really can use some help here since I'm not having good luck. How does one go about finding a good doctor without spending a ton of money on trial and error? I've already been down that road many times and it's costed a lot with no results. I can't afford non results anymore. So far I did a search for doctors in my insurance network. This turned up a list of sleep medicine doctors but did not give any details of their specialties. I called the insurance company and asked them who is good at dealing with rem sleep disorder. They didn't have a clue and just had the same list I looked at on the website. You would think they would be on top of that stuff to save themselves a bunch of money. They seem to be on top of everything else when it comes to saving money. I did an internet search to try and find any source of information that would point me in the right direction and that didn't turn up anything. Is there anything I can do or look at to find the right doctor? Is there a list somewhere of reputable doctors and what their specialties might be? Is it possible to talk to someone that would know who's good at treating this stuff?