Need help, suspect UARS. Want to try APAP - need advice and guidance.

[canyouhearmeaya]

Just to add, I actually think a palletal expander might be what I had as a kid. I didn't have train track braces, it was a piece that went up into my hard pallette, and then a bigger retainer that I wore at night. That might be why my teeth are so good now, and I don't have any crowding etc. But equally, I still didn't have correct tongue posture.

It's more about tongue posture than it is about mouth breathing. You can mouth breathe and have poor tongue posture (as I did for the last 6 months, as I was mainly nasal breathing but I never knew my tongue posture was incorrect, and it was still resting low in my mouth), however you CAN'T have correct tongue posture and mouth breathe - it's PHYSICALLY impossible. So if you correct tongue posture, you'll correct mouth breathing (and hopefully overtime influence correct facial development to open up your airways, and also prevent tongue collapse during sleep.) However mouth breathing WON'T Correct tongue posture, and is actually as a long term thing futile. You'll get the obvious benefits of nasal breathing such as filtering and warming of the air, increased No2 etc (which will likely make nasal breathing easier, due to a reduction in allergies, which is exactly what I got) but you will won't be influencing cranofacial development.

I also think the fact that I don't snore is a big sign (and also much more common in 'UARS'), as snoring is the pallette vibrating, so if your soft palette is 'loose' then it has the capability to vibrate and cause snoring, the fact I don't snore virtually at all, suggests to me that my palette isn't the issue, but rather the tongue collapse. This would also explain why my RDI is twice as high during REM sleep, as the body enters paralysis the muscles (including the tongue) further relax, and thus the tongue collapses further. So by training the tongue to say anchored forward and increasing tone over time with the above practices, I hypothesise (and hope) that the tongue will no longer cause my SDB, and my airways will open up as my structure improves.

Personally, I suspect on a very basic fundamental level that's the difference between 'Sleep Apnea' sufferers and 'UARS', that people with UARS are predominately having obstruction from the tongue (hence why they respond well to MAD devices) and SA suffers have more of a component of their soft pallete (hence why things like Didgeridoo playing can overtime reduce AHI.) Ofc it will never be totally exclusive, I also suspect that's why some suffers of sleep apnea can have 'good therapy' and yet still feel like crap all the time, because their AHI is resolved but their RDI probably still stucks. If they're using a full face mask, then invariably they don't have good tongue posture (or they wouldn't be mouth breathing).

Equally, poor tongue posture won't always result in SDB, because you have other factors like the inital size of the airway, tongue size etc. So it's never going to be as clear cut as I'm discussing it, but I do think fundamentally there is probably a lot of truth in this.

[mtnguyen]

I thought face shape stop changing after 18-20?

[canyouhearmeaya]

I thought face shape stop changing after 18-20?

As I said, look into Mike Mew's discussions on this. He uses examples of Steven Hawkins, and adult stroke sufferers, all of which undergo changes in their cranofacial development.

It's certainly slower in adult ages, but it doesn't seem to stop.

Equally, if it did stop, how would a palletal expander work? It's working on the same principle as the tongue, applying pressure to the skeletal structure to influence development.

[canyouhearmeaya]

Okay so still running on pressure 8. The night before last I tried sleeping WITHOUT mouth taping, and had an AWFUL night sleep. I really do think therapy is working, because the 2 days before that I didn't feel 'amazing' but I certainly didn't feel like a lifeless corpse dragging myself through every second of the day.. Yesterday I did. So it seems mouthtaping (or rather ensuring I minimize leaks through my mouth) are very important for me to get good therapy. I am having an issue with a sore nose, even though I've been using Lansinoh. On the right nostril it looks like the skin has split slightly.. I'm hoping that area of my nose will 'toughen up' an get used to the mask over time and it'll stop becoming sore?

How do my leaks look overall? Still on the high side generally? I am wondering if it's worth trying a night using the 'M' size pillows. I like the fit of 'L', but I do suspect that they're slightly more prone to leaking.. More likely to leak as I move around during sleep. I wonder if this could be a likely way to reduce my overall leakage? I presume getting leak numbers down is important to good therapy?

The small gap in therapy was due to me taking off the mask to apply some more Lansinoh, as I woke up to my nose feeling very sore.

[Pugsy]

Your leaks overall aren't horrible. I have had worse myself but they don't disturb my sleep at all and don't impact how I feel during the day so from a therapy and sleep quality standpoint...acceptable.

Now if your sleep is disturbed in any manner even by relatively small leaks (for any reason be it mouth or mask movement) then that's a different story. If you tell me that you slept great and felt great today...I wouldn't worry about these little not so pretty leak graphs.

As for the P10 causing nostril discomfort. As long as you are fitting it properly and the mask isn't sliding around on your nose ...it's the sliding around that can cause blisters or skin abrasions which we don't want....
the nostrils should toughen up just a bit but they shouldn't be so painful beyond minor tenderness. There should not be an open sore or raw skin. That's a sign of improper fit...either pillow size or strap tension adjustment.

I was a nasal pillow user for many years before this mask was released and it still made the end of my nose feel like I had ran into someone's fist. The straps were just a bit too snug. Took about a week for the straps to stretch at little and that soreness to fad away.

I think that maybe you should consider a different mask if the soreness persists or you are getting an open sore and changing pillow sizes doesn't help.

[canyouhearmeaya]

Your leaks overall aren't horrible. I have had worse myself but they don't disturb my sleep at all and don't impact how I feel during the day so from a therapy and sleep quality standpoint...acceptable.

Now if your sleep is disturbed in any manner even by relatively small leaks (for any reason be it mouth or mask movement) then that's a different story. If you tell me that you slept great and felt great today...I wouldn't worry about these little not so pretty leak graphs.

As for the P10 causing nostril discomfort. As long as you are fitting it properly and the mask isn't sliding around on your nose ...it's the sliding around that can cause blisters or skin abrasions which we don't want....
the nostrils should toughen up just a bit but they shouldn't be so painful beyond minor tenderness. There should not be an open sore or raw skin. That's a sign of improper fit...either pillow size or strap tension adjustment.

I was a nasal pillow user for many years before this mask was released and it still made the end of my nose feel like I had ran into someone's fist. The straps were just a bit too snug. Took about a week for the straps to stretch at little and that soreness to fad away.

I think that maybe you should consider a different mask if the soreness persists or you are getting an open sore and changing pillow sizes doesn't help.

Makes sense, I will try Medium size pillows tonight. Large size I think may be ever so slightly too big, allowing for more movement than should be happening when fitted. I notice that during the night especially toward the end I start getting minor leaks that I can hear, and it almost seems hard to get them to stop.

Hopefully medium pillows are the answer! Will update tomorrow.

[canyouhearmeaya]

Okay so a little update, as discussed I bumped the min pressure up to 8, I also ended up moving the upper limits up to 12. So I did 6 days at pressure 8/12, varying results. I started using a chin strap, which seems to have really helped with leaks, the last few nights I've virtually eliminated all large leaks! Which is good.

I also realised that I had the pillows on a little too tight, which was causing the soreness on my nose. Loosening them up seems to have helped solve that. So leaks sorted, soreness sorted.

On the downside, I'm still not feeling great.. I've had some days where I feel a bit better, and then some worse. Last night I tried bumping the minimum upto 9, and then the max upto 15 (I figured the max didn't matter as people have said, the machine will only go where it wants/needs to anyway.) As far as I know, I slept okay last night.. In the sense that, I fell asleep quickly, don't really recall waking up etc. However I feel like cr*p today. Almost as bad as I did without any cpap..

Now, it could be an anomoly ofcourse, but I also want to look at it from a technical standpoint, to understand my therapy. I do wonder if INCREASING the pressures, has actually lead to worse therapy.. I've attached last nights data. Since getting this machine back, I've been running in regular Autoset. As you can see from the data, it seems flow limitations are driving my pressure increases.

Now, I bought the 'for her' because I know the 'for her' mode is supposed to handle FL's better... Is that right? I wonder if I should give that mode a go? Does anyone understand the setting well enough to know if my data looks like in should be a better fit for that mode, 'in theory'? My RDI is very similar each night, a few OAs, Hypops and centrals. The score (as expected I suppose with my case) doesn't really correlate with how I feel/quality of sleep.

Or does anyone else have any other suggestions?

[canyouhearmeaya]

Just to add to the post above, here's the data from the night prior. (Pressure 8/12)

[Pugsy]

I don't know if the for Her mode of handling FLs is better or not.. It is a bit different in how it responds to everything in general.
If you do switch to the for Her mode the FL graph will for sure look worse because it is looking at FLs more closely.

To be honest...I have never had much going on in the FL department so I can't really say that one way is better than the other way since I haven't ever had much FL to deal with.

You are just going to have to try the other mode and see how you feel.

This is not a quick one night solution...it's a maybe solution that is going to take long term commitment to maybe work.

[canyouhearmeaya]

I don't know if the for Her mode of handling FLs is better or not.. It is a bit different in how it responds to everything in general.
If you do switch to the for Her mode the FL graph will for sure look worse because it is looking at FLs more closely.

To be honest...I have never had much going on in the FL department so I can't really say that one way is better than the other way since I haven't ever had much FL to deal with.

You are just going to have to try the other mode and see how you feel.

This is not a quick one night solution...it's a maybe solution that is going to take long term commitment to maybe work.

Oh I totally agree, I just want to feel I'm going in the right direction! This is the issue with the 'for her' mode, I'm not sure anyone really knows how it works? Hopefully someone does!

I was just baffled that last nights sleep has left me feeling so awful, in spite of everything seeming to be okay.

Is it even possible that higher pressures can actually make therapy worse?

[Pugsy]

Is it even possible that higher pressures can actually make therapy worse?

For some people yes but not you I don't think and not in the way you think either. I think that the higher pressures and the changing of the pressures is causing less restful sleep more than anything else.

I was just baffled that last nights sleep has left me feeling so awful, in spite of everything seeming to be okay.

That's because you have yet to come to terms with how you feel during the day isn't tied to the numbers you see on the reports. It's tied to your sleep quality itself and we can't measure it very well with the data we have available.

The best numbers in the world don't guarantee anything except a good math score.

[canyouhearmeaya]

For some people yes but not you I don't think and not in the way you think either. I think that the higher pressures and the changing of the pressures is causing less restful sleep more than anything else.

Yes that's what I wonder, if the machine is responding to FL's by increasing pressure, but after a point the pressure isn't actually helping resolve the FL's, and therefor instead its just mesing up my sleep quality. If that's a possible scenario, that could make sense. I believe 'for her' caps the pressure at 12? Or only works upto a pressure of 12? I wonder if that's why.

I think tonight I might set the machine back down to 7/12 and into 'For Her' and see how that goes.

[canyouhearmeaya]

What's also (possibly) interesting to note is that, although the machine is marking very few RERAs (1 a night and not every night), they ALWAYS coincide with sudden steep pressure increases, in response to a flow limitation. Ofcourse, we don't know how accurate the RERA scoring is (given the limitations of CPAP and it's inability to truly determine sleep v wake), but it's interesting to note none the less that every time it happens, it coincides with a sudden pressure jump seemingly caused by a FL. So *maybe* that's indicative that there could be many more arousals that the machine is missing, due to pressure jump sensitivity. Hopefully this is where the 'for her' mode helps out. I hope. Touch wood.

[yrnkrn]

but after a point the pressure isn't actually helping resolve the FL's, and therefor instead its just mesing up my sleep quality

For me, FLs were not solved by higher CPAP pressure 18, but were solved with a BiLevel EPAP=9 IPAP=14 PS=5.

[canyouhearmeaya]

but after a point the pressure isn't actually helping resolve the FL's, and therefor instead its just mesing up my sleep quality

For me, FLs were not solved by higher CPAP pressure 18, but were solved with a BiLevel EPAP=9 IPAP=14 PS=5.

Were you using fixed pressure CPAP or an APAP? Did your machine have EPR?