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

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 08, 2018 3:29 am

Eugh. Another not great night. Started with ear plugs alone, couldn't seem to fall asleep so took a half dose of Nytol. I think I slept a bit, but I'm really not sure how much. I came to at around the 5 hour mark again, struggling to exhale, the machine had gone upto pressure 9. I didn't feel like I'd slept at all, I do wonder if I'd just been there in a half asleep state but not actually falling asleep because of the machine. Also looks like there was some large leaks last night.

Does pressure increase in response to leaks? I found trying to exhale against 9 horrible.. and that's with EPR 3, I don't understand how I can barely exhale against that pressure and yet some people must be using MUCH higher pressures?!

Both nights when I've ended up taking the mask off, the pressures had increased.. I don't know what to try, do I try sticking it into regular CPAP mode and set min and max to 7, so it can't change and see if that works?

I do wonder if the fact that this potential whole situation of UARS is CAUSED by restricted nasal airflow, that trying to use nasal pillows is part of the problem.. I thought CPAP would help, but could it be that it's why I'm struggling to breathe comfortabley against the pressure?

I really want this to work, but so far it's been a total flop.

Going to see the doctor this afternoon, going to take my Intus sleep report and see if I can get referred for a) a more indepth sleep study and/or b) to an ENT to try and figure out what's causing the airway restriction. I really pray they don't palm me off.

Surely if I have a report, which shows an RDI of 15, they can't turn me away without referring me?

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 08, 2018 4:19 am

Here's the sleepyhead for last night, you can see at one point I got up and took the mask off, that was to take the Nytol. Think I got the screenshot set up right this time?

Pugsy · Post by **Pugsy** » Fri Jun 08, 2018 7:10 am

canyouhearmeaya wrote: ↑
Fri Jun 08, 2018 4:19 am
Think I got the screenshot set up right this time?

Yes, for the most part.
Turn off the pie chart (Preferences/Appearance tab...remove check mark) so that you can see the AHI bar graphs.
Or just don't scroll so far down on the left to get all of the machine settings. They aren't that important but the stuff above is.

No...the machine won't try to fix a leak by increasing the flow rate or pressure. Doesn't work that way.

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 08, 2018 8:22 am

Pugsy wrote: ↑
Fri Jun 08, 2018 7:10 am

canyouhearmeaya wrote: ↑
Fri Jun 08, 2018 4:19 am
Think I got the screenshot set up right this time?
Yes, for the most part.
Turn off the pie chart (Preferences/Appearance tab...remove check mark) so that you can see the AHI bar graphs.
Or just don't scroll so far down on the left to get all of the machine settings. They aren't that important but the stuff above is.

No...the machine won't try to fix a leak by increasing the flow rate or pressure. Doesn't work that way.

Okay cool.

So the doctor has referred me to the ENT, however said I'll get a letter in the post, and it could be a couple of months wait..

Presumabley with an RDI of 15, and a low AHI, an ENT is the best person for me to see? As the problem must be with restricted breathing? Or are there any other bases I might be missing?

I've ordered a MAD, just to cover that base, although I can't help but suspect the problem is in my airways nose rather than it being jaw related, certainly moving my jaw forward and stinging my tongue out when breathing normally doesn't feel like I'm breathing any easier.

The other option with CPAP is, do I try a full face mask? Is it possible that my nasal airways are restricted, that may be why I'm struggling to breathe through the nasal pillows, in which case would a full face mask potentially provide resolution?

Pugsy · Post by **Pugsy** » Fri Jun 08, 2018 8:31 am

Do you have trouble breathing through just your nose during the day?
Do you have trouble breathing through just your nose at night?
The above questions pertain to normal breathing and not with cpap involved.

Take one of the nasal pillows all by itself and not attached to the mask...put it up to your nose and breath in and out.
Is the amount of air movement you are experiencing with just the nasal pillow comfortable? Or is it restricted?

You keep asking questions that I can't answer except to say "maybe".

I have no idea if a full face mask would be any easier for you. There is no way for me to know...my crystal ball is broken.

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 08, 2018 8:43 am

Pugsy wrote: ↑
Fri Jun 08, 2018 8:31 am
Do you have trouble breathing through just your nose during the day?
Do you have trouble breathing through just your nose at night?
The above questions pertain to normal breathing and not with cpap involved.

Take one of the nasal pillows all by itself and not attached to the mask...put it up to your nose and breath in and out.
Is the amount of air movement you are experiencing with just the nasal pillow comfortable? Or is it restricted?

You keep asking questions that I can't answer except to say "maybe".
I have no idea if a full face mask would be any easier for you. There is no way for me to know...my crystal ball is broken.

GET A NEW CRYSTAL BALL THEN!!! haha.

I can breathe okay in the day, but it does feel at times like I'm not getting quite enough air through my nose.

I just tried applying the nasal pillows to my nose, without the mask and then breathing, and it certainly feels more restrictive breathing with them there than without.. So, does that mean that the pillows might not be a good match for me? Why would the pillows in of themself make it harder? And do you have any suggestions on what else to try? (I.e. full fake, or just a regular nasal mask?)

Rub a dub dub that crystal balll.

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 08, 2018 8:52 am

I also just asked my brother to try placing the pillows on his nose and breathing, and tell me how it felt breathing through them (pillows only not with the mask or machine), he reckons it actually felt EASIER to breathe through the pillows?!?

I definitely can feel increased resistance with the pillows. It feels simiar to when i'm using the CPAP - the influx of air pressure, having to labour more to breathe rather than it feeling relaxed and natural..

Pugsy · Post by **Pugsy** » Fri Jun 08, 2018 9:04 am

What size nasal pillow are you trying?
Do you have a larger size available?
If not...need to try a different mask of some sort.
As to which type or kind or brand....the crystal ball says "whatever interests you"

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 08, 2018 9:10 am

Pugsy wrote: ↑
Fri Jun 08, 2018 9:04 am
What size nasal pillow are you trying?
Do you have a larger size available?
If not...need to try a different mask of some sort.
As to which type or kind or brand....the crystal ball says "whatever interests you"

I've tried small, medium and large (came with all 3.) Small doesn't fit me at all, medium and large I can seem to make both fit, but both feel difficult to breathe with.

I guess I just wonder if its a feasible explantation, as I have no experience with this CPAP business!

Can it be the case that some people quite simply struggle to breathe with pillows, and can actually have a totally different experience with a nasal mask?

I presumed it was quite simply cpap in itself that I was struggling with, not the mask in of itself. Hmm

Pugsy · Post by **Pugsy** » Fri Jun 08, 2018 9:27 am

canyouhearmeaya wrote: ↑
Fri Jun 08, 2018 9:10 am
Can it be the case that some people quite simply struggle to breathe with pillows, and can actually have a totally different experience with a nasal mask?

I think that some pillows offer enough resistance that it's a problem for some people.
Usually the added volume of moving up a size is enough to resolve the issue.
I am afraid that the resistance of a full face mask might also be an issue.
All masks have an inherent resistance to them...some a little more than others.

I would be more concerned with why you can't handle the resistance and most others can....including your brother.

All the full face mask might do is let you breathe through your mouth without losing therapy seal.
Would that help you overcome the resistance issue? I don't know.

Of the nasal pillow masks....maybe the F & P Brevida might offer a little less resistance along with an over all slightly large pillow volume...might be easier for you.
The Brevida pillows are much softer and have one layer instead of the dual inner cone thing that the ResMed pillows have. The down side to the Brevida and the ultra soft pillow...some people find that it sort of inflates and deflates with respiration and that in itself is a bit annoying to some people. I had it happen and it took me a few nights to be able to tune out the inflate/deflate annoyance.
Other people say they have no idea what I am talking about.

Perhaps if you used the P10 while awake during the day and used the Large...you might get to a point where you can tune it out.
Maybe you need more "conditioning"

Babies use this stuff at higher pressures than you are using without issue.

Most normal healthy people won't feel or notice the resistance when not hooked up to the hose and machine.
The fact that you do is unusual. As to why? I have no idea. Have you ever had any lung function tests?

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 08, 2018 9:34 am

Pugsy wrote: ↑
Fri Jun 08, 2018 9:27 am

canyouhearmeaya wrote: ↑
Fri Jun 08, 2018 9:10 am
Can it be the case that some people quite simply struggle to breathe with pillows, and can actually have a totally different experience with a nasal mask?
I think that some pillows offer enough resistance that it's a problem for some people.
Usually the added volume of moving up a size is enough to resolve the issue.
I am afraid that the resistance of a full face mask might also be an issue.
All masks have an inherent resistance to them...some a little more than others.

I would be more concerned with why you can't handle the resistance and most others can....including your brother.

All the full face mask might do is let you breathe through your mouth without losing therapy seal.
Would that help you overcome the resistance issue? I don't know.

Of the nasal pillow masks....maybe the F & P Brevida might offer a little less resistance along with an over all slightly large pillow volume...might be easier for you.
The Brevida pillows are much softer and have one layer instead of the dual inner cone thing that the ResMed pillows have. The down side to the Brevida and the ultra soft pillow...some people find that it sort of inflates and deflates with respiration and that in itself is a bit annoying to some people. I had it happen and it took me a few nights to be able to tune out the inflate/deflate annoyance.
Other people say they have no idea what I am talking about.

Perhaps if you used the P10 while awake during the day and used the Large...you might get to a point where you can tune it out.
Maybe you need more "conditioning" Babies use this stuff at higher pressures than you are using without issue.

Most normal healthy people won't feel or notice the resistance when not hooked up to the hose and machine.
The fact that you do is unusual. As to why? I have no idea. Have you ever had any lung function tests?

Nope, no lung function tests. I suspect this whole issue stems from an issue with nasal breathing, hence UARS (why, I don't know), so maybe the pillows are just exacerbating that issue somehow. I guess if you have no actual issue breathing your nose normally, then maybe the extra resistance from the pillows isn't a problem, but maybe when you combine that with a physiological resistance, it becomes too much?

This is what I'm hoping the ENT will help me work out, but equally that process could be very long and hence I just want to find some sort of relief in the short term.

Pugsy · Post by **Pugsy** » Fri Jun 08, 2018 9:41 am

UARS isn't nasal. It's related to the other part of the airway. That's why a Pes device is used to measure things for definitive diagnosis...down in the other part of the airway.
If someone had nasal issues of some sort that restrict breathing it isn't UARS and cpap won't really help unless by chance it's a humidity thing with swollen nasal mucosa.
You may have some restrictions in the nose of some sort that is affecting your breathing and then your sleeping...but it's not UARS up in the nose itself.

And yes, ENT specialist is the logical next step.

TASmart · Post by **TASmart** » Fri Jun 08, 2018 9:48 am

Just want to add that I see some flow limitations - minor, but you may be able to up the pressure slightly to correct that. With an EPR of 3, I would guess that your feeling of difficulty breathing is more psychological than anything else. I do know that if I use the suggested size small nasal pillows I feel very restricted breathing, going to a medium solves that issue.

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 08, 2018 9:51 am

Pugsy wrote: ↑
Fri Jun 08, 2018 9:41 am
UARS isn't nasal. It's related to the other part of the airway. That's why a Pes device is used to measure things for definitive diagnosis...down in the other part of the airway.
If someone had nasal issues of some sort that restrict breathing it isn't UARS and cpap won't really help unless by chance it's a humidity thing with swollen nasal mucosa.
You may have some restrictions in the nose of some sort that is affecting your breathing and then your sleeping...but it's not UARS up in the nose itself.

And yes, ENT specialist is the logical next step.

Hmm. Well my RDI of 15, with low AHI is usually how they define UARS isn't it? I thought UARS could be caused by various things (e.g. Jaw, nasal etc), and ultimately all it meant that there was restriction somewhere with breathing, which is causing sleep arousal. The sleep company reffered to it as 'Upper Airway Obstruction', and then by definition I saw that UARS was RDI over 5/10 with low AHI.

I just tried fiddling around with the mask then, and it almost feels like if I force the mask upwards, I can breathe easier with it. It's as if the airflow is blocked somewhat with the normal fitting of the mask, but if I effectively push the mask up 'almost turning my nose up like a pig' the airflows better.. But when I'm trying to wear the mask normally, when I'm breathing out it's blunted.. as if, I breathe out and it's like I'm almost being plugged up. Although I have no idea how I can make the mask stay like that, doesn't seem possible even adjusting the straps to all angles.

I did notice for a few tiny periods over the last couple of nights it felt like I could breathe okay with it, I wonder if it was because the mask was being pushed up by the pillow, creating the same effect.

canyouhearmeaya · Post by **canyouhearmeaya** » Fri Jun 08, 2018 9:57 am

TASmart wrote: ↑
Fri Jun 08, 2018 9:48 am
Just want to add that I see some flow limitations - minor, but you may be able to up the pressure slightly to correct that. With an EPR of 3, I would guess that your feeling of difficulty breathing is more psychological than anything else. I do know that if I use the suggested size small nasal pillows I feel very restricted breathing, going to a medium solves that issue.

I'm already using large, which doesn't seem to make any real difference. Also, by upping the pressure, it feels even more difficult to breathe.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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