UARS / Irregular breathing pattern

[nevermind]

Yesterday I did something I should have done way earlier: I installed a camera. This is what I saw after my first night:

• There is a lot of leg motion (and sometimes a funny wave-like motion beginning with the upper body and ending with the legs)
  
• The frequency of leg motion is about 1 / 20s - perfectly matching the general frequency of the spikes in the flow rate
  
• Not every single flow-spike was accompanied by visible motion. But there might very well be "invisible" motion going on (like small motion hidden by the blanket, or just muscles contracting wihout causing much motion).
  

So I am quite convinced now that PLM is a major (if not sole?) contributor to my daytime fatigue.

I found the video to be very interesting, and I would recommend it to anyone, especially @2SleepBetta, if you are looking for more insights about what is really going on. I found for example two minutes of exaggerated breathing in the CPAP data that I would have classified as arousal or REM or whatnot - but video showed that I was awake, plain and simple, and just forgot about it (but remembered after seeing the video).

[2SleepBetta]

Yesterday I did something I should have done way earlier: I installed a camera. This is what I saw after my first night:

• There is a lot of leg motion (and sometimes a funny wave-like motion beginning with the upper body and ending with the legs)
  
• The frequency of leg motion is about 1 / 20s - perfectly matching the general frequency of the spikes in the flow rate
  
• Not every single flow-spike was accompanied by visible motion. But there might very well be "invisible" motion going on (like small motion hidden by the blanket, or just muscles contracting wihout causing much motion).
  

So I am quite convinced now that PLM is a major (if not sole?) contributor to my daytime fatigue.

I found the video to be very interesting, and I would recommend it to anyone, especially @2SleepBetta, if you are looking for more insights about what is really going on. I found for example two minutes of exaggerated breathing in the CPAP data that I would have classified as arousal or REM or whatnot - but video showed that I was awake, plain and simple, and just forgot about it (but remembered after seeing the video).

nevermind, 


Great stuff for me to follow up. Thankyou. 


Please share information on which camera and your setup: lighting, infrared, game camera, etc.? 


You nailed it on the first try, once you did it. I hope to come as close so a potential fix can be found.

The bit about forgetting, our (?) denial mechanisms (?) and then remembering is instructive, probably applicable to me.

2SB

[sheepless]

that's cool that you were able to use a camera to correlate the pattern with movement. more circumstantial evidence to support my plm hypothesis about my flow in the absence of a camera of my own (yet). thanks for reporting.

now, I'll be really interested in what you find to do about it. before I knew the difference between restless legs and periodic leg movements and before I had associated the pattern with plm, doc had me try gabapentin after I complained of restless legs (afaik, gabapentin may be prescribed for plm as well). after about 60 days I didn't notice any effect on wakefulness and I didn't know enough at the time to check against my flow rate to see if it affected the respiratory spikes. instead I subjectively concluded that if anything the gabapentin made my pre-sleep restless legs worse. plus the side effect warnings made me nervous about continuing it.

I had to switch to Kaiser when premiums for the same coverage with another insurer rose to $2500/mth for 2 of us with $6,000 each deductible. monthly Kaiser premiums are significantly less but the cost of services and Rx's are double and triple anywhere else in my experience. it costs me ~ $350 for every 10-15 minute visit to a kaiser GP and I have no sleep doc in Kaiser (closest non board-certified, Kaiser doc with an 'interest' in sleep is in another city 40 miles away; there are at least 2 much closer non-Kaiser sleep clinics in town with dedicated certified sleep docs). guess I'm editorializing but that's why I haven't done anything more about plm yet.

in terms of home remedies, I've found a few stronger strains of indica cannabis distillate (legal in my state) that really seem to help. intuitively I suspect (wonder if) it might make the plm worse but it allows me to sleep longer through them, extending my typical sleep session length from less than an hour pre-pap to more and more 3, 4, 5 hour and even longer sessions than anytime in memory. (I believe 6 months into asv has made a huge difference in this regard as well, compared to apap.) the most recent night I didn't use this type of cannabis I had 10 full stop awakenings with sessions never exceeding 1.5 hours each, compared to 4 full wakes last night with the longest session at 5.75 hours. there might be a rebound effect when discontinuing use of the cannabis but I was fully waking in the range of 6 to 19 times before cannabis so in general sleep is slowly slowly slowly improving even if that's the case.

Ha. nothing's ever clean and easy. my wife just texted me a CBS news article saying that high potency mj use might increase the chance of developing psychosis. each of us have to weigh the pros and cons, I guess, just like with everything else. with little or no basis in fact my gut feeling is that I'd prefer to take my chances with mj than gabapentin.

at any rate, I look forward to reading about what works for you and what doesn't.

[nevermind]

2SleepBetta,

About the camera: I use an inexpensive network IP surveillance camera (Reolink RLC-420) with integrated IR illumination and record the video with a software running on my NAS. The image quality is way better than what I would actually require. 

There are a lot of camera options, including the so called "nanny camera" models. They are supposed to be easy to setup, can be controlled via mobile, but they typically require a connection to a cloud server somewhere in the world. This is something not everybody is comfortable with.

The "old-style" surveillance cameras don't need remote servers but require a PC (or NAS) in the local network to record the video stream.

And last but not least are the so called "action cameras", battery-driven, with an integrated SD card for recording. But I did not find a cheap one that includes IR illumination. And you need external power supply anyway to record an entire night.

Just make sure that the camera has a wide-angle lens (about 80° horizontal field-of view), then you don't need a large distance between bed and camera.

[nevermind]

Two weeks ago I met with my sleep doc and started a Levodopa therapy for periodic limb movements (100mg + 100mg retarded).

The Levodopa reduced the amount of my PLM substantially to about 30-50% of the original amount. Both frequency and amplitude of the motion is reduced. There even happen to be periods of up to 30min without any visible motion now.

Unfortunately, my daytime symptoms (sleepiness, brain fog, ...) did not improve at all.

I don't know what to make of it. Since I don't feel any adverse effects of Levodopa (yet), I think I an going to ask for an increased dosage. There is still quite a bit of PLM going on, and maybe the critical point for restorative sleep has not been reached yet. But I do not feel overly enthusiastic about the chances...

[Sleeprider]

PLM and other sleep disruptions are difficult to tolerate and to treat. I suspect it is like titrating CPAP pressure, and you were started on a low dose, that will be increased until symptoms become sufficiently diminished. Don't be discouraged until you reach that point and then don't feel relief. At this point you are still moving in your sleep, and should not have very high expectations until the condition is controlled.

[mper6794]

Hi, nevermind
Hope you are doing fine, and we can share and exchanges experiences on similar cases.
You might know: UARS (and PLM's), my two sleep drawbacks, are also my essential single focuses in this Forum, as well as my Quest.
I am on two-year therapy (some 1.6 years almost lost with wrong doctor, machine, parameters, and concepts). Since some 5 months on BPAP vauto, Oscar, and learnings on medications, things got rather better, and i think i reached a stable score on HYF Index (How You Feel; that includes side effects of medications) of some 4.3 to 4.5 (scale  0 to 5.0).
Nowadays, i ultimateley worked out UARS and other types of Air flow reductions, while still looking for the best approach on supplements and medications to tame PLM's (under lowest possible doses and lowest side effects).
On this latter, i basically went on pregabalin, L-Tyrosine, pramipexol, all of them with good control on PLM's, however with unbereable side effects. I am facing the best outcomes with a mix of Valerian herb 1000mg at bed time, and clonazepam 0.5 during my usual wake-up at some 2:00...2:30...3:00 in the morning (never look watch).
At the time, somewhat inspired on your camera approach, i audio-recorded my scractches, with excelent results, which allowed me calibrating my waveforms, concerning UARS and PLM's.
Good Luck

[nevermind]

Thank you for your feedback, it's good to know that you found a way to control your UARS/PLM to a degree that improves your quality of life.

I am still searching for a solution. What happened in the last couple of months:

• I quit the L-Dopa. It reduced (yet not eliminated) the visible amount of PLM, and I tolerated it well -- but I did not see any improvements in how I feel. I also tried L-Tyrosine without any effect to PLM whatsoever. I think I should give Valerian a try.
  
• I quit APAP for the same reason: no improvement in how I feel. But I have to admit that I did not thoroughly try to optimize the curves to battle flow limitations. Maybe I should give it another try...
  
• I was sent to a neurologist to get my brain checked. They checked EEG, MRI and cerebral blood flow, but nothing was found (luckily).
  
• It has come to my attention that I have a deviated septum in my nose, and that my nasal airflow is impaired most of the time. Until now I somehow ignored this fact, because I was so used to it that I considered it to be "normal". But recently It got me thinking that that poor nasal breathing / UARS / PLM might all be related in my case. If my arousals were in fact primarily breathing-related, then maybe (some of) the PLM comes from that, too.
  

So now I am at the point where I have to decide if I am going to get my deviated septum fixed (Septoplasty) or not. I know that this is supposed to be quite a standard procedure, but I have to admit that I am a bit scared...

[Sleeprider]

Nevermind I have been afflicted with deviated septum and chronic congestion to the point my best relief was putting on the. ASAP pillows and blasting air. This summer it got so bad I couldn’t exhale and possibly nasal drip was miserable. It got to the point I thought I might have polyps or something as it was like a valve slamming shut on exhale. Then the next inhale was an attempt to clear my airway and swallow. Yuck!

Simple solution after a week of Flonase I was back to better than normal. It’s a cheap non-prescription solution. Maybe worth a try.

[Noripterus]

Your flow rate waveforms look like textbook RERAs.