PLM pattern or RERA spikes?

[Sleeprider]

If you are consulting with Lanky, the PLM information is relevant. In my opinion the spikes don’t represent arousal in most cases, but movement. I’ll go farther and say your fatigue my not be related to respiratory effort or resistance, as that seems to be mostly addressed in your current settings. I do recommend you pursue PLM as a more likely cause.

[permabear]

If you are consulting with Lanky, the PLM information is relevant. In my opinion the spikes don’t represent arousal in most cases, but movement. I’ll go farther and say your fatigue my not be related to respiratory effort or resistance, as that seems to be mostly addressed in your current settings. I do recommend you pursue PLM as a more likely cause.

Thanks for your insights Sleeprider. Going after PLM is quite a challenge. I've checked the most obvious causes (e.g. iron deficiency) and quitted caffeine and alcohol quite some time ago. Taking meds doesn't seem appealing to me, while these bring their own problems with them. 
So I'm trying the respiratory route for as long as I can. Maybe it's respiratory events that evoke the PLM? Just asking.

[Sleeprider]

I wish I had more expertise with PLM. Hopefully some members with more experience can help. We could change the title of this thread to recruit more interest from members dealing with PLM instead of a CSR pattern which I think is misleading, and distracting from the root cause.

[permabear]

Changing the title sounds just fine for me. Could I do this myself? Or do I need the help of a moderator?

[Sleepy Quixote]

@permabear

Hey permabear, the little spikes caused by PLM are very similar to what LankyL describes when talking about RERA spikes, the main difference is in timing and frequency. RERA spikes generally won't have a clear pattern, spikes caused by PLMD can be random but frequently will settle into a rhythm, a discernable pattern, similar to yours. No amount of pressure adjustments of any sort will have an effect, unlike staving off RERAS with more PAP or EPR trying to adjust pressures for PLM activity just degrades your overall treatment efficacy. PAP therapy is also known to aggravate PLM rather than help it.

The arousals caused by PLM can be highly variable, you may have had a good night when on EEG, as you say there were lots of movements but only a few arousals. The tech could have misclassified too. My PLM arousals were 69, my respiratory arousals were 53, yet they focused solely on the OSA, actually dismissed the PLMD entirely. We are very alone when it comes to any sort of professional recognition of PLM as a significant cause of sleep disruption. Even when an EEG shows clearly an arousal caused by PLM, that arousal doesn't have the same effect? Really?

We play the hand we are dealt. I would highly recommend you get a sleep monitor with accelerometer, that you can attach to the suspect limb, your sleep study should pretty well show which is the most active. The one I have is great for PLM because it has finger tip attachments that fit toes too and don't shake off like some. Unfortunately it doesn't import into OSCAR but I sync them by starting at the same time and can compare charts on different devices, OSCAR on the laptop and Sleepon on the tablet, times line up so its pretty easy to correlate events. The device I have is the Sleepon - Go2Sleep SE (SE is important, the ring isn't stable enough for PLM, need the finger cot interface) 

Having the data from the sleep monitor helps me refine PAP therapy for OSA, minimizing the influence of PLM noise on my decisions.

I'll attach a couple Sleepon charts for example, the first one is from before PLM management efforts the second is current (the little green dots are movement). The third is the control, my right foot. Will ping back in this thread a little later with an exhaustive list of everything I've tried and effectiveness or not. Please remember everyone is different and what works for one may not work for another.

[Sleepy Quixote]

@permabear

cont'd 

1. Talk to GP to see if they are wiling to take PLM seriously, at least start some testing.

1a. Do you also have RLS? If yes treat with PLM
2. Start shopping a neurologist, they take quite some time to get appointments with.
3. Get some Blood work ordered to check on iron status, folic acid, vitamin B12, thyroid function, and magnesium levels, complete blood count (CBC) and measurement of levels of blood urea nitrogen (BUN) and creatinine. Make sure the iron work up is a full Iron Profile. (For some iron can be an instant cure. If male be very careful and don't just wing iron supplementation because it is very difficult to bring down if it isn't a problem to start with.)
4. If any of those are deficient, resolve the deficiencies before moving on to other therapies.
5. Stop all caffeine intake after 10 am (If your normal day is 7ish in the morning to 10ish at night, if not, shift it so you stop caffeine 12 hrs before sleep time.
6. Keep in mind that even if you aren't fully awakened by the PLM they can and do kick you up into lighter sleep stages, robbing you of deep sleep and literally kicking you out of REM.
7. Consider melatonin, for me it wasn't a cure, but does seem to help me get more deep sleep cycle time in.
8. Gabapentin is pretty tame as far as neurological meds go and did objectively consolidate my PLM sessions. Before Gp they were pretty much all night long, see the first chart in previous post. After Gp the PLM is consolidated into sessions between midnight and 4 am. I can move the sessions around by adjusting time taken but cant eliminate them. The halflife is fairly short, so if taken too early its wearing off before deeper sleep sets in, if taken too late, its not taking full effect during sleep time.
9. Exercises did nothing for PLM, but does seem to aid in sleeping more soundly. 
10. Stretching the main PLM muscle groups. Not much happened there for me.
11. TENS made it worse, I quit after one session it was so bad. Contemplating giving it another trial over an extended period. (Week maybe)
12. Nightly bananas and Ceylon cinnamon. 2 week trial no effect
13. Tart cherry juice. 2 week trial no effect.
14. Various potassium, magnesium supplements various times. No objective benefit (no change in charts) mild subjective benefit, felt like maybe slept better, still use from time to time.
15. I'm still very tired most of the time so have decided to persue some of the heavier meds. Some NIH studies point to a couple off label uses of meds that in a clinical setting did show measurable reduction of PLM and PLM arousals. Valproate and
Ropinirole show promise. If the Neurologist agrees I'm going to try a two week trial of each and go with the one that reduces the PLM evident in the sleep monitor charts, if neither helps, it's back to square 10.

Just my 2 cents and what's off the top of my head at the moment. 

Included a screen cap of a PLM session from last night. It's not as defined as your examples, but many are, didn't have time to scan for a better example, note the further out you zoom the spikier it looks.

[jwest]

But can't you address FL with EPAP or APAP? There's more than one way. Because, what I've gathered, is when you turned EPR down, your oscillatory waveform reduced, right?

You've tried ASV?

What do you mean by RERA spike? In the EEG, you mean? I suspect you should be able to line up the waveform and the EEG, which should tell you what is responsible for the arousal. If there is flow limit/flattening top to the waveform, followed by arousal, then it suggests it's due to flow limitation (RERA).

[permabear]

But can't you address FL with EPAP or APAP? There's more than one way. Because, what I've gathered, is when you turned EPR down, your oscillatory waveform reduced, right?

You've tried ASV?

What do you mean by RERA spike? In the EEG, you mean? I suspect you should be able to line up the waveform and the EEG, which should tell you what is responsible for the arousal. If there is flow limit/flattening top to the waveform, followed by arousal, then it suggests it's due to flow limitation (RERA).

I did try to reduce my FL with just PAP pressure but that didn't do very well. So I guess I need at least some (let's say 4.0) PS in order to address my FL.
Als far as I understood the waxing and waning pattern is not an expression of FL although it correlates to the use of PS.

I never had the opportunity to try ASV. It's expensive and if my spike pattern actually is caused by PLM it won't do much I suppose.
  
I meant the little spikes in my flow rate chart (Oscar). TheLankyLefty talked about flow rate spikes in his recent Youtube video RERAs Unmasked: Silent Sleep Killer (around minute 5.13).
Thanks for the suggestion to compare the Oscar data with the PSG. Unfortunately the PSG charts are very compressed. I asked the physician to have a look at the raw data but they wouldn't do that.

[permabear]

Hey permabear, the little spikes caused by PLM are very similar to what LankyL describes when talking about RERA spikes, the main difference is in timing and frequency. RERA spikes generally won't have a clear pattern, spikes caused by PLMD can be random but frequently will settle into a rhythm, a discernable pattern, similar to yours. No amount of pressure adjustments of any sort will have an effect, unlike staving off RERAS with more PAP or EPR trying to adjust pressures for PLM activity just degrades your overall treatment efficacy. PAP therapy is also known to aggravate PLM rather than help it.

The arousals caused by PLM can be highly variable, you may have had a good night when on EEG, as you say there were lots of movements but only a few arousals. The tech could have misclassified too. My PLM arousals were 69, my respiratory arousals were 53, yet they focused solely on the OSA, actually dismissed the PLMD entirely. We are very alone when it comes to any sort of professional recognition of PLM as a significant cause of sleep disruption. Even when an EEG shows clearly an arousal caused by PLM, that arousal doesn't have the same effect? Really?

Hi Sleepy Quixote,

Thanks a lot for joining this thread. Sorry to hear we're possibly in the same boat here. Thank you for all the suggestions you gave. I've tried some of them allready (with no effect) but will take a close look at the others.

My last PSG was with PAP (EPAP 4.0 PS 4.4 IPAP 8.4) and my neurologist was quite happy about it. AHI and RDI 0.0, REM 149min, N1 11min, N2 168min, N3 129min, Arousal index 6.6/h. PLM index was 84/h of which arousals only 3.6/h. His conclusion: PAP therapy works just fine and PLM (although high) is not an issue because they're not related to arousals. 

BTW my former PSG (without PAP) showed a PLM index of 32/h of which arousals 14.2/h. So in my case the PLM seems to have gone up with the use of PAP indeed.

To be honest I'm very careful when it comes to supplements or even meds. I tried GABA but it gave me a dizzy head in the morning every single time I used it. Same with Valerian root. Should I give it more time perhaps? I interpreted the dizzy head as a nogo but maybe judged to quick.
If you are trying meds, be very careful. I read about some that will irreversibly exacerbate PLM over time. I don't remember the word for it but it's a well known phenomenon. I do not have RLS. Only occasionally when I drank alcohol but I've quit alcohol and caffeine for a few months now. 

So yes, my spiky pattern may very well be related to PLM. The thing that gets my mind going is that I do feel better after raising EPAP. Strange isn't it? I made some dietary changes recently (intermittent fasting, quit wheat for a while, no added sugars) so this might also have something to do with it as well. 
One other question. If the little spikes are PLM spikes. Does that mean they're in someway related to an arousal? And could it be possible that my PSG report doesn't show the whole picture? I mean, arousals are being identified using a definition, right? If they would look at e.g. CAPs (cyclic alternating patterns), could this possibly undermine the current conclusion that "all is well"? Or is this ruled out by the sleepstage numbers (REM, N1-3) that seem to be quite good?

[permabear]

If you are trying meds, be very careful. I read about some that will irreversibly exacerbate PLM over time. I don't remember the word for it but it's a well known phenomenon. 

It's called augmentation. 

"Augmentation is defined as a worsening of RLS symptoms that occurs after starting a dopaminergic medication to treat RLS. The medication is effective when it's first started, but over time symptoms worsen or return to what symptoms were like prior to starting the treatment."

Didn't do a deepdive on this subject, but you might do some research before you decide to go for the meds route. As far as I understood different meds have different augmentation risks (but I don't know which one has the lowest risk).