Quote:As I continue to struggle a bit with my therapy I wanted to add a private message exchange between Sheepless and me that may benefit others out there battling the dreaded Centrals issue with RLS and PLMD.

He had commented on a user's post:

Quote:Sheepless:
"I often suffer restless legs before falling asleep. it's the need to voluntarily tense leg muscles to relieve agitation or creepy crawlies. people that have restless legs often have periodic limb movement and vice versa but not necessarily both. plm are involuntary and occur during sleep. we are not aware of them. I have never felt any leg pain associated with either rls or plm (agitation with rls but not pain). I had arousals from plm in my at home sleep study but they were not reported to me until I asked a third time for copies of my reports. when I complained repeatedly about fragmented sleep and rls, I was given a prescription for gabapentin. besides the Rx warnings scaring me off it, my subjective sense was that it made the rls worse. at the time I did not know how to recognize my respiratory response to plm in my flow rate so I didn't check that. last night I had an ahi of 0.00 with 9 mask off and dozens of wake/rollover/go back to sleep events. I believe many of these are related to plm arousals. even so, I had an ahi of 0.00 so apparently periodic leg movements aren't related to apnea (although I will say that I struggled and thrashed mightily in the throes of apnea and the fight to breathe before cpap, but that's different than plm). sorry I know nothing about cymbalta. I'm afraid I don't have anything more to offer other than to suggest leg pain could be associated with back pain. and, you're probably aware that it's not uncommon to get leg cramps and that may be eased by eating bananas or other sources of potassium. I have no qualifications to justify this but I doubt waking with leg pain is directly related to rls or apnea."

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My question:

Hi Sheepless,

I didn't want to hijack the thread you posted on but wanted to ask you a question. Your experience with RLS and PLMD sounds just like mine. Did the ASV help you to get your AHI down? I have a boatload of centrals but it is really related to constantly waking up. My AHI is 10+ with 95% being Centrals. I'm thinking of going the ASV route but not sure if it will make a difference. How do you feel on a daily basis? I'm not open, at the moment, to taking any medication for this.

Thanks for any insight you have.

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Sheepless' response:

Quote:Hi fings1.  I've commented with parts of my story in a lot of threads; I hope this isn't too much duplication.  
briefly, I was diagnosed 30 years ago with central apnea.  no treatment available.  late 2016 was tested with severe obstructive apnea despite near equal numbers of ca and oa.  I had good results on paper with apap but never got the long term average ahi under 5.  doc was pleased.  I felt awful.  picked up a used asv and after experimenting for the better part of a year have gotten ahi down under 0.5.  hard to tell if it resolved my ca because the resmed asv is said to be so good with ca and periodic breathing it only reports unclassified apnea.  still I believe the asv better at resolving all types of my apnea, given my low ahi.  I almost immediately felt much less sick (if still tired) after moving to asv.  

now my problem is fragmentation, brought on, I believe, by arousals from periodic limb movements.  I've learned to identify my respiratory response to them in my flow rate graph (I've posted examples in several threads).  I don't think asv has had any effect on plm but for some reason my sleep sessions have lengthened considerably over my year on asv.  never used to sleep more than an hour at a time.  now usually getting at least one 3-5 hour session a night.  

one problem I think I'm starting to see is that pressure support rises in response to either my sharp inhale during plm or the reduced and often flow limited breaths that follow the big inhale.  I surmise the machine thinks it's addressing ca or pb or flow limitations, leading to unnecessarily rising ps and ipap.  that causes more leaks and aerophagia than I'd like.  guess I'm going to have to seek out a chemical solution to plm.  

I'm rambling on.  don't know if I've addressed your interests.  feel free to ask.  I have barely enough knowledge to be dangerous but lots of thoughts and opinions.  

I think you're asking if asv can reduce sleep wake junk ca brought on by plm?  I'm not sure of the answer but I'm inclined to think yes, it'll nudge you to breath during a pause whether you are awake or asleep.  it'll stop ca but it won't stop arousals from plm.  

I took a quick look at your "thoughts on my charts" thread.  IMO, you'd do better on asv as long as you don't have a particular kind of heart condition they warn against.  the system seems very resistant to prescribing asv.  it doesn't seem to happen often without a lot of patient advocacy.  or as in my case, going around the system.  when I was on the fence, a member suggested I get a used asv and if it didn't improve things it would be very easy to resell.  I was desperate for relief and that was all I needed to take the gamble.  turned out to be the right choice.

I'm happy to discuss anywhere, but it can help others if we put all but really personal stuff in the main forum. it's up to you.  

I wish you the best.
sheepless

(07-22-2019, 08:46 AM)Sleeprider Wrote: I have seen many members in your situation that converted to ASV with great success.  Hope you found a good deal, and will be rewarded for your investment with great sleep.