CPAP indicators of PLMD, O2 Ring

[Cam12]

@Cam12

Hey Cam, PLM activity can be inferred in OSCAR charts, takes a bit of a trained eye to pick it up and until you really get it down trying to identify it amongst all the other noise can be a bit misleading. The best way to monitor PLM activity is with a sleep monitor that has an accelerometer built in. Preferably a monitor you can attach to various appendages, especially those known to be most active. In my case its most frequently the left foot. The one I use is the Sleepon Go2Sleep SE, it covers SPo2, heart rate, sleep quality and motion. The SE part is important because it includes finger tip holders that also work well on toes, the ring alone isn't stable enough on an appendage doing the hoki poki while we sleep. Unfortunately none of this particular devices data can be imported into OSCAR, I recommend it because its the best for tracking PLMs and its easy enough to sync up by putting it on at the same time you start the pap, then use the laptop to check OSCAR while correlating PLM events on a tablet or phone. (The Sleepon Windows app is a waste of time for PLM)

I'm attaching a screenshot of it's mobile output so you can check it out. The green dots populating the lower portion of the screen represent movement. (Be sure to scroll down to the bottom of the image to see the activity)

I messed up that last “reply with quote”.

Interesting to see how they come in pretty regular clusters too.

[Sleepy Quixote]

@Cam12

Lots of cool stuff to chat out. Will get back in detail later today when I get back to workstation.\

Since you are contemplating buying, will drop this now, the screen was from the Android App, from what I recall the iOS app looks very similar, I'd recommend running it on the iPad. Synch is easy, just put the thing on the appendage you wish to monitor (it starts automatically when put on) at the same time you tap the CPAP start button, mine lines up within seconds and refining the correlation becomes clearer with analysis.

Will ping back later today with more detail.

SQ

[Sleepy Quixote]

@Cam12

Hey Cam, here's a rundown of earlier posts, sorry of any repetition - 

--"Do you find that the sleep stage data is accurate I.e) that more REM/N3 from monitor = less EDS?"

Yes, I find it definitely overestimates the quantity of REM and N3 sleep, it also is likely to show waking as N1, but with enough activity it will get the idea you are awake. Some of my extremely active PLM sessions will register as a waking period, without EEG it does the best it can and subjectively it's estimations are fairly close to how I feel the next day. (during the worst of my PLM bouts I essentially am awake, just not fully conscious)

--"How closely time-wise, can you sync device start with CPAP start? Any advice on how to do it so they’re as closely synced as possible?"
I can get it within seconds of sync. I simply gear up, mouth tape, chinstrap, P30i mask and headgear (not plugged in) sit on the edge of the bed, slip on the Go2sleep SE, snap the mask inlet in, tap the power button, lay down to sleep. (I don't use auto start or stop, might be even easier if I did?) 

--"Is the Screenshot attachment from the Windows App or another app? I have a Windows laptop but all else Apple - iPads, iPhone . Hopefully there’s an iOS app but if not, would you still recommend the device, even though the windows app is sketchy?"
Screenshot is from Android Galaxy S7+ tablet. They support iOS, would use them before using the Windows App. They ruined the motion graphing in the PC desktop app. Its a pretty worthless dotted line.

--"Interesting to see how they come in pretty regular clusters too."
It's pretty cool to be able to zoom in on those clusters and actually see the distinct rhythmic pattern and how it correlates to the spikes in the OSCAR Flow Rate chart. Attached a zoom for you to see.

There are several other charts available in the user interface that give minute to minute granularity of all aspects tracked. Pretty sure they are shown on the website.

Lots to digest in the PLMS associated with WMH document, will be looking over that the next couple of days.

[Cam12]

@Cam12

Hey Cam, here's a rundown of earlier posts, sorry of any repetition - 

--"Do you find that the sleep stage data is accurate I.e) that more REM/N3 from monitor = less EDS?"

Yes, I find it definitely overestimates the quantity of REM and N3 sleep, it also is likely to show waking as N1, but with enough activity it will get the idea you are awake. Some of my extremely active PLM sessions will register as a waking period, without EEG it does the best it can and subjectively it's estimations are fairly close to how I feel the next day. (during the worst of my PLM bouts I essentially am awake, just not fully conscious)

--"How closely time-wise, can you sync device start with CPAP start? Any advice on how to do it so they’re as closely synced as possible?"
I can get it within seconds of sync. I simply gear up, mouth tape, chinstrap, P30i mask and headgear (not plugged in) sit on the edge of the bed, slip on the Go2sleep SE, snap the mask inlet in, tap the power button, lay down to sleep. (I don't use auto start or stop, might be even easier if I did?) 

--"Is the Screenshot attachment from the Windows App or another app? I have a Windows laptop but all else Apple - iPads, iPhone . Hopefully there’s an iOS app but if not, would you still recommend the device, even though the windows app is sketchy?"
Screenshot is from Android Galaxy S7+ tablet. They support iOS, would use them before using the Windows App. They ruined the motion graphing in the PC desktop app. Its a pretty worthless dotted line.

--"Interesting to see how they come in pretty regular clusters too."
It's pretty cool to be able to zoom in on those clusters and actually see the distinct rhythmic pattern and how it correlates to the spikes in the OSCAR Flow Rate chart. Attached a zoom for you to see.

There are several other charts available in the user interface that give minute to minute granularity of all aspects tracked. Pretty sure they are shown on the website.

Lots to digest in the PLMS associated with WMH document, will be looking over that the next couple of days.

Thanks for all the info, really appreciate it. I was going to ask about how granular the data is and it looks like you can zoom in pretty closely, which is what I need to show in order to clearly show the impact of individual plms on pulse rate, respiration rate, sleep stages, etc especially when I can combine it with synced sleep video which I suspect will show that the visibility/size of plms on video has little correlation with its impact on sleep parameters I.e.) that even barely noticeable plms on video still have sign. impact on sleep quality. 
You mentioned sleep stages not showing awake periods consistently - showing as N1 sleep. This is consistent with my PSG studies which show that I’m “ awake” for, in one PSG, 50% of time after sleep onset, while on video I’m unconscious the entire time. PLMS occur whenever I try to transition to REM or N3 sleep, bouncing me back to N1 or “awake” state that I’m unconscious of. I take naps often and will lay there having PLMS, get frustrated that I couldn’t get to sleep (feels like 10-15 minutes have gone by) but then look at CPAP Data on screen and I’ve actually been “asleep” for 2-3 hours. Have tried to explain this to several Sleep Specialists and have gotten mostly blank stares. 
See new Sleep Specialist on Sept 1st so hope to have enough data to clearly show what’s happening.

Will order the device you recommended tonight so hopefully will have several days of data before appointment.

Can’t thank you enough for the help, could change the course of my treatment as current medications for PLMD are not helping. Actually want to be accessed for source of PLMS signals and possible brain cell ablation (I’ve read some studies that show just a few cells firing could be the root cause). The medication route, with tolerance issues being the biggest problem I.e.) Klonopin works well for about 1-2 weeks, has largely been a losing battle with some sleep specialists eventually blaming my EDS on medications (even after I show them current video of me have PLM arousals every 15-40 seconds all night), reducing them, having worse PLMD including return of daytime symptoms and going through the entire process of gradually increasing dosages, adding other medications, etc, etc.. 
Anyway, hope that’s not TMI but maybe it matches to some degree some of the experiences and frustrations you’ve had in the course of treatment. PLMD sucks.

[Sleepy Quixote]

@Cam12

Hey Cam

Yes, PLM effects me much the same way, kicking me out of deeper sleep or REM up into lighter sleep. It shows very clearly in the charts, drop into REM and a couple of minutes or even seconds later a cluster of rhythmic PLMS bumps me up into N1 or N2 and continue for quite some time before subsiding, drop into deep or REM sleep... Oh no you don't! All night long. 

If you are getting the ring make sure to get the SE version, it comes with all four sizes of ring holders and four finger cot style holders. the finger tip ones are the most stable under PLM. The thing itself is just a little cylinder that fits in the holders, I suspect a person could simply tape it to the skin anywhere, but then the Spo2 and heart rate readings might be way off but the accelerometer would still work.


Speaking of the accelerometer, we are so far outside what the algorithm expects that the autobot critique of the night will write something stupid like Toss and Turn 96 times, only 9 times per hour "Good". It's pretty nonsensical that tossing and turning 96 times would be normal and it becomes obvious looking at the chart that the rating algorithm only counts the movements with the highest amplitude and is blind to the hundreds of movements under a certain amplitude that are very clearly shown on the "Minute Report". That minute report is worth every penny of the more than reasonable initial cost of the device.

The manual says it can go three nights on a charge, bunk. One charge for one night that is it. It would probably make it through a 14 hour sleep, or an 8 hr sleep and a couple of naps. Don't want you to be disappointed like I was. First night, worked great, app said 89% charge left, so I went to sleep only to find it stopped midway through the next night.

Also recommend that if you get up in the night for any reason, leave the thing on, it will record everything and still lays over OSCAR nicely. If you take it off for any reason it creates a new session under that 24hr period for each time you take it off and put it back on. Those sessions are under one heading but can only be displayed individually. You can't stitch them together. 

On your experience, definitely not tmi. It is so typical of our lot in PLMD life. I have yet to come across either online or in person one single individual who received decent care for let alone attention to the PLMD.

Keep me posted on the brain cell ablation avenue, I would certainly go there if it was only a few cells mis-firing. One thing to note is there have been individuals who have had amputations of the most active limb, accidental due to industrial accident who still suffered phantom tremors and sensations, this has been noted in both PLM and RLS.  

Best

[mper6794]

_ # post 3......yes, indeed, looks, good example of PLMS; just like mine (first part , 4 hours, of the night in general);

all the  best

[Cam12]

@Cam12

Hey Cam

Yes, PLM effects me much the same way, kicking me out of deeper sleep or REM up into lighter sleep. It shows very clearly in the charts, drop into REM and a couple of minutes or even seconds later a cluster of rhythmic PLMS bumps me up into N1 or N2 and continue for quite some time before subsiding, drop into deep or REM sleep... Oh no you don't! All night long. 

If you are getting the ring make sure to get the SE version, it comes with all four sizes of ring holders and four finger cot style holders. the finger tip ones are the most stable under PLM. The thing itself is just a little cylinder that fits in the holders, I suspect a person could simply tape it to the skin anywhere, but then the Spo2 and heart rate readings might be way off but the accelerometer would still work.


Speaking of the accelerometer, we are so far outside what the algorithm expects that the autobot critique of the night will write something stupid like Toss and Turn 96 times, only 9 times per hour "Good". It's pretty nonsensical that tossing and turning 96 times would be normal and it becomes obvious looking at the chart that the rating algorithm only counts the movements with the highest amplitude and is blind to the hundreds of movements under a certain amplitude that are very clearly shown on the "Minute Report". That minute report is worth every penny of the more than reasonable initial cost of the device.

The manual says it can go three nights on a charge, bunk. One charge for one night that is it. It would probably make it through a 14 hour sleep, or an 8 hr sleep and a couple of naps. Don't want you to be disappointed like I was. First night, worked great, app said 89% charge left, so I went to sleep only to find it stopped midway through the next night.

Also recommend that if you get up in the night for any reason, leave the thing on, it will record everything and still lays over OSCAR nicely. If you take it off for any reason it creates a new session under that 24hr period for each time you take it off and put it back on. Those sessions are under one heading but can only be displayed individually. You can't stitch them together. 

On your experience, definitely not tmi. It is so typical of our lot in PLMD life. I have yet to come across either online or in person one single individual who received decent care for let alone attention to the PLMD.

Keep me posted on the brain cell ablation avenue, I would certainly go there if it was only a few cells mis-firing. One thing to note is there have been individuals who have had amputations of the most active limb, accidental due to industrial accident who still suffered phantom tremors and sensations, this has been noted in both PLM and RLS.  

Best

Thanks again. Been having a really tough time recently. Neurologist initially agreed to brain ablation eval then backed out saying that the procedure is only for brain tumors and epilepsy though it's the most precise imaging available esp. for finding focal epilepsy which is pretty close to our condition though the depolarizations stay constrained to the motor areas instead of spreading throughout the brain.  Diagnostic discrimination....aug. See her again today so....will let you know.

This is probably for a PM but do you struggle with depression or just "mental pain"...like "fingernails on a blackboard" feeling inside your head? And intolerance to stimulation e.g.) bright light, music, staying focused in conversations, when writing and reading, etc.? I really struggle with these issues daily and it's difficult to descried to my family and providers. Would appreciate hearing what your experience is like? Thanks.

[Cam12]

Pretty sure you should be able to line the O2 up with your PAP data. There is an explanation guide somewhere on this website.

Thanks for this info. Invaluable. Meeting with my neurologist today and showing your example compared to my CPAP data + resp. rate, pulse rate, motion (O2 Ring data) and video. Trying to push for getting assessed for brain ablation procedure as medication route just isn't working, though may try to institute a rotating medication regime first based on tolerance to medications.

[Crimson Nape]

Here are the syncing instructions: https://www.apneaboard.com/wiki/index.ph...with_OSCAR

It's very simple.  Import your CPAP data.  Take note of its start time.  If you started both at the same time, then open the O2 data's directory.  Rename this file to match the CPAP starting time, then import this file.

In case this subject should come up at a cocktail party, when you start a Wellue oximeter, it will flash dashes until it fully acquires your vitals. At that point, it will display the time and date. This is when the Wellue will record the time/date information for the filename, but it will include the all the data prior to this point in the file. . . (Armed with this knowledge, you'll be the hit of the party!)

- Red

[Sleepy Quixote]

@Cam12

Hey Cam,

Sorry about the Neurologist backing out of the eval. That's a bummer, it's just an evaluation, hopefully she comes around.

No worries about PM, were all in this together.

"do you struggle with depression" Not so much depression as constant irritability due to being exhausted constantly. Was misdiagnosed with depression years ago due to the PLMD and OSA and went through that wringer, unnecessarily.

I've never had the fingernails on a black board feeling, for me it was more like a loud almost visible static, like on old TV that wasn't tuned to a broadcasting channel.

Since I started CPAP that has subsided and only get it on real bad days. OSA for me is about 45% of the problem, 55% PLM.

"And intolerance to stimulation e.g.) bright light, music, staying focused in conversations, when writing and reading, etc.?" The more exhausted I am the more these things grate.

"difficult to descried to my family and providers" You ain't kidding, everyone I try to express how tired and exhausted I am just comes back with hey they're tired too, were all tired... insinuating I need to man up.

Back before CPAP I would get so tired that I would have constant auditory hallucinations, usually some classic orchestra tune playing in a loop, or brass band, don't like either, or Hispanic radio like it was being picked up by a filling in a tooth and playing ceaselessly in my head. I don't speak Spanish, nor do I ever listen to those stations. I did live in the southwest for number of years and generally would have Mexican folks on the crews I worked on who brought radios. The only thing I can think of is it's a recording from somewhere in my memory.

 Good luck with the Neurologist, and keep in touch.

SQ