Desperate for relief, why isn't CPAP working?

[sheepless]

sventory: it might help if you describe what you mean when you say you sleep terribly every night. do you feel sick during the day? sleepy? do you mean you wake up a lot? or?

re restless leg syndrome (rls): as you note, what you describe sounds less like rls than involuntary daytime cramping or spasms. I won't venture a guess what causes that but would think they'd be uncomfortable and disconcerting and if they happen while asleep I can imagine they'd have a negative effect on your sleep quality.

my understanding is that rls is experienced while awake. the way it feels, however described, makes you want to move about and flex the affected muscles to relieve that unpleasant feeling. it may feel like you don't have much choice but moving and tensing the muscles is voluntary. for me it's exactly the same as when I have a big 'stretch' while yawning. the feeling that motivates the stretch is similar or the same and the relief we get from tensing the muscles is similar or the same.

you didn't mention periodic limb movement in sleep (plms) but for the sake of contrast these involuntary 'tics' (my word) occur during sleep so we are (I am) not aware of them. that 'in sleep' label kind of implies existence of plm when awake but I don't know if that's a thing. my wife describes my plms as sudden brief movement that may be in my legs or may be full body, she's not sure. it can shake the bed enough to disturb her sleep. what's notable about these is that they occur in regular (periodic) intervals. my wife sometimes counts to herself between them. sometimes the time between is a count of 16 or maybe 20, but if it's 16, all the movements in that series are 16. if 20, all the jerks in that series are separated by a 20 count.

to my knowledge, these conditions - and I'll guess your muscle tensing issue - don't respond to pap, but your flow limited breathing might. I'll be following this thread with interest hoping you figure out how to use pap to resolve that problem.

[sventory]

Awesome, thanks for that comparison! Yes I see our forms are close, except mine has a ton of little rigid lines, I think I do a lot of spasms and rigid movements in my sleep, perhaps REM Sleep disorder or something else. Hmm and are you using bipap?

One thing that looks weird to me though is your ideal flow looked like my 48 seconds custom user flag:



This seems the closest to what normal you posted, so why the heck is it flagging that as a 50% flow limitation?

---

Okay thanks I will talk to my doc about bilevel, but I meant, if I am awake, upright, and breathing normally, and my breath curve still looks like it's limited, that's got to be pretty abnormal right? Would you mind posting your sleeping breath curve so I can see what it's supposed to be like?

[sventory]

sventory: it might help if you describe what you mean when you say you sleep terribly every night.  do you feel sick during the day?  sleepy?  do you mean you wake up a lot? or?

re restless leg syndrome (rls): as you note, what you describe sounds less like rls than involuntary daytime cramping or spasms.  I won't venture a guess what causes that but would think they'd be uncomfortable and disconcerting and if they happen while asleep I can imagine they'd have a negative effect on your sleep quality.

my understanding is that rls is experienced while awake.  the way it feels, however described, makes you want to move about and flex the affected muscles to relieve that unpleasant feeling.  it may feel like you don't have much choice but moving and tensing the muscles is voluntary.  for me it's exactly the same as when I have a big 'stretch' while yawning.  the feeling that motivates the stretch is similar or the same and the relief we get from tensing the muscles is similar or the same.    

you didn't mention periodic limb movement in sleep (plms) but for the sake of contrast these involuntary 'tics' (my word) occur during sleep so we are (I am) not aware of them.  that 'in sleep' label kind of implies existence of plm when awake but I don't know if that's a thing.  my wife describes my plms as sudden brief movement that may be in my legs or may be full body, she's not sure.  it can shake the bed enough to disturb her sleep.  what's notable about these is that they occur in regular (periodic) intervals.  my wife sometimes counts to herself between them.  sometimes the time between is a count of 16 or maybe 20, but if it's 16, all the movements in that series are 16. if 20, all the jerks in that series are separated by a 20 count.    

to my knowledge, these conditions - and I'll guess your muscle tensing issue - don't respond to pap, but your flow limited breathing might.  I'll be following this thread with interest hoping you figure out how to use pap to resolve that problem.

I just wake up too much, spend too much time awake, don't feel refresh or well-rested when waking up. I have some hypothesis that if I am experiecning breathing issues my body jolts itself to kind of rouse or change position to make breathing easier. I do a lot of myclonic jerks when I do sleep, my wife has told me (though I don't usually sleep with her)

[ardenum]

Get a nightvision camera.

More on that here: http://www.apneaboard.com/forums/Thread-...ion-camera

[holden4th]

The user event flag was new to me and thank you for pointing it out. While I am much refreshed nowadays I do have days when I feel a bit fatigued and wonder if these shorter events that I hadn't set up in SH might contribute. They are set for 8 seconds by default and I'll leave them there and watch them with interest. The 20% FL doesn't register but the 50% FL does though not in a big way.

As you noted, some of these FL events are longer than 10 seconds but don't show up as hypopneas. Strange, but I have an idea as to why. I wonder if they are RERAs. The Resmed Aircurve S10 Vauto doesn't show RERAs on SH. However, I noticed that RERAs were an issue for me and flagged by my Respironics machines and I tried to make adjustments to minimise them. So that I don't hijack your thread I won't post my SH data but just thought that this was worth mentioning. There are people on this forum who have good advice about minimising RERAs and maybe they could provide feedback that would be helpful.

[Molly]

Hi, I am new to sleep apnoea but when I read your post I automatically pondered whether you have fibromyalgia as well as sleep apnoea.  But then I read the link in the first response about Upper Airway Resistance Syndrome (UARS) and thought that is a possibility too.  I would look into both if I were you.  You would see a rheumatologist re: fibromyalgia.  I would suggest getting your magnesium levels checked by your GP as well, as people with fibro often experience restless leg syndrome and magnesium is often deficient (supplements can help).

[sventory]

I got my magnesium checked and the levels were very normal (at the top end of the range even).