Desperate for relief, why isn't CPAP working?

[sventory]

I've been using CPAP for 2.5 years. I was elated when diagnoses with sleep apnea because I had had sleep issues for years before that to which doctors could not provide any explanation or relief (but it started somewhat suddenly after sleeping perfectly fine for the first 21 years of my life). After acclimating to the mask I thought I was doing okay, but was never great or wow I feel normal again. Certainly better than without. This past winter I developed what I thought was restless legs, where my muscles tense in the early morning that disrupted my sleep. Except now I have the constant muscle tensing in my arm as well and it's all day everyday. I'm convinced my 12 years of sleep deprivation is slowly killing me, with now these recent neurological symptoms and I still can't find relief, I feel like I'm wasting my life away struggling and suffer everyday. It's just been a slow downward spiral for my sleep and health and I am desperate.

Now recently I have gotten significantly worse. I sleep terribly every night, so terribly. I change my positions to sleep at night, doesn't appear to help. I thought maybe my pressure is too high because I could still feel my uvula or some part of my palate collapsing when I fully relax, like maybe it's pushing it into my airway? Tried all pressures from like 9 to 20, tried no EPR and lvl 3 EPR. Nothing seems to help. I should also note I am 100% acclimated, the mask doesn't bother me at all.

The most crazy to thing to me is though, my numbers are horribly low, like super low. I can't fathom seeing the charts some of you guys post how can you possibly survive with such AHIs. One interesting thing to note though, when I add custom events to SleepyHead (to catch under 10 seconds), I actually have much more of those. I'm not sure how reliable the machine is for catching 5 second events, but that's where I set them up.

Please take a look at some sleepyhead data and tell me if there's anything at all I can do, anything at all you see that looks like it could be an issue. I really would like to sleep. If I could sleep even just 4-5 hours in a row, I would be a heaven.

My stats:
33y/o 185 lbs 6'1"
Airsense 10
Airfit full face mask
Current pressure is 14-18.
Two custom sleepyhead events:


Let's take my current week, here are my summaries for them:


This is Monday-Saturday. Very low AHI, but if you look at the custom events, the majority are there and and don't factor into the overall AHI. Strangely even moreso is if you expand the UserFlag #2 (which is 50% flow reduction). I have many events that occur MORE THAN 10 seconds. At which point, according to the Air Sense 10 documentation, it should count as a hyponea, but it's not flagged as such. Here's more details fur User Flag 2 on Thursday:


Many over 10 seconds, so why aren't they being flagged normally? Including 1 for 48 seconds!? When I go to the flow rate graph and zoom in on that it looks like this:



Now I don't see anything abnormal about the breath curve inside that event compared to outside. So not sure what's going on. In general about my breath curve though, the majority of it looks like this:


Which doesn't seem like a normal breath curve according to this video: https://youtu.be/-gie2dhqP2c?t=79 it looks like a reverse of the flow limited chart. There are also weird things like this, not near any events (near 43:10):



So that's all the information I have. Not sure how to read the inspr/expr time to see if that concludes anything. I should also note by AHI is actually worse, I normally read at night and browser my phone in the morning and keep the mask on for a total of about 60 minutes which is skewing the AHi a little.

1) Does anyone see anything amiss or thing the mass amount of custom events is weird?
2) How does your normal breath curve shape look?
3) Does anyone ever wake up and feel their pulse in the back of the upper airway pulsating against the soft palate and actually causing noises just from that slight vibration? I hate this happen a lot. Seems like my soft palate is doing full collapse even with CPAP.
4) Anything else at all to help me improve my sleep? I practice good sleep hygiene, and alcohol or caffiene, no screens late, etc.

Thanks all.

[tedvpap]

Have you researched UARS?
http://www.apneaboard.com/wiki/index.php...ome_(UARS)

[sventory]

I've heard of that, It was my understanding that it was kind of like pre-sleep apnea, but looks like that's not necessarily true. Which is in line with my sleep studies, I've had one in 2012 that had 0 apneas but a 6.8 Respiratory disturbance index. Then in 2015 another sleep study, and now I have actual apneas. So it seems like it's highly possible that's what I had/have. To me it seems like UARS could just be explained as in "The patient experiences arousal before an actual apnea happens".

That's kind of what I surmised explained my numbers. I thought I'm just super light/sensitive sleeper now and wake up from any small (under 10 seconds) difficulty in breathing. Based on the wiki explanation, that sound's like exactly it. I should note, I recently had a drug induced sleep endoscopy and the doctor noted also full tongue collapse as well as some palatal. So it seems like I got the best of both worlds perhaps.

However, the treatment is the same for CPAP, so why isn't it working? Or what can I do better?

[tedvpap]

I am not very knowledgeable but your understanding matches mine. I like your explanation, "The patient experiences arousal before an actual apnea happens".
The treatment is pressure. So the question is have you tried high enough pressure. It looks like you are using auto. If so, you need to take control over the pressure.

[Sleeprider]

Sventory, your breathing is flow limited as indicated by the flattened and downward sloping peaks on inspiration. This is probably not being flagged by the machine if all breathing is flow limited. The best solution for that is bilevel pressure, however your Resmed machine can provide up to 3-cm difference in IPAP and EPAP pressure through the use of EPR. My recommendation would be to increase EPR if you're not already using it, and otherwise consider moving up to the Vauto. You say EPR did not make a difference for you, but we're talking about something that may only be visible close-up in the wave-form

Your symptoms may not be related to your PAP therapy. We can try to optimize the therapy to the extent possible, however once that is done, you need to look at other potential causes for the symptoms you described. Muscle tension and fatigue are symptoms that can encompass many possible causes, including Lyme's, myalgic encephalomyelitis, RLS, hormone or blood imbalances etc. Narrowing that down is a big challenge, but one you apparently need to undertake.

[sventory]

Does RLS actually cause tensing muscles at rest though all day? I have no desire to move the limbs, and I've seen it described as uncomfortable, itching, or desire to move. Not the muscles slowly gradually contracting. I thought I had it at first, but it seems different. Oddly enough since the tensing in my arm started, the tensing in my legs nearly went away, which is what I thought was RLS. I've had all blood tests under the sun and everything is normal in terms of my levels. I am getting an MRI and EEG soon too, so we will see about that. That's why I'm desperate, doctors can't seem to be find anything else wrong.

I will try EPR-3 with a high starting pressure of 18. I tried this for about 3 hours last night, and it just filled me with so much gas out both ends it was hard to tolerate. But it was at that level I noticed I could fully relax or even try to focus my airway closed and I could still breathe. I also got the CMD50D+ OX ordered so I can see if I have any pulse rate changes or desats during the night. That would also be helpful in seeing if the treatment is working.

I'm glad you are telling me my breath looks flow limited, at least it's some actionable item I can work on. Though, what if all my breathing is like that? I can't confirm right now at work but will later, but I'm pretty sure even when I was using the mask while completely awake my flow rate breath curve looks like that. If so, what would that indicate? What does your breath curve look like?

[Sleeprider]

More pressure support, which is only possible through a true bilevel will eliminate or significantly reduce flow limitation and the sub-apnea issues that go with it. If you were using 20/14 for PS 6.0 I think you'd feel a huge difference. I can't tolerate that much pressure support, but I've seen a lot of people with that and more. Basically around 8 cm of pressure support the machine is doing most of the inspiratory effort as long as you trigger spontaneously.

[sventory]

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?

[Sleeprider]

Before we get into flow limitation as an issue, its severity varies a lot between different people.  It may be not problem at all, or it may prevent good quality sleep. We're really not in a position to make that judgement from looking at Sleepyhead charts.  If you have chronic upper airway restriction, then bilevel is considered to be a very effective means of mitigating that. 

My flow curves vary through the night and I don't pretend them to be an example of good breathing.  Here is a recent example with some kind of arousal included in it.  http://www.apneaboard.com/wiki/index.php..._and_BiPAP 


I have occasionally found some flow-limited breathing in my charts.  It's not that common, but it happens. I have increased my pressure support setting to 4 recently and this seems to be happening less now. The image shows mild to moderate flow limit followed by an arousal with snore.



Here is an example of ideal breath form (not mine).

[Sleeprider]

One think I noticed in your chart is a lot of minor bumps, especially in the exhale portion. This often suggests movements. I'm sure if you sleep with someone, they could confirm, or you could rig video or other movement sensors. Even a fitness watch that monitors sleep might show an awake condition with this much motion.