In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Pugsy
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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pugsy » Sun Dec 11, 2022 1:57 pm

When you have time could you please add your equipment to your profile?
If trying 2 different masks...list the second in the comments section of your equipment profile.

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Pod153
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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Sun Dec 11, 2022 2:16 pm

I've added my equipment to my profile (though I can't find the For Her in the list, but I guess it's the same machine except for the software). I'm not using the nasal pillows any more so really only trying to make one mask work currently.
Pugsy wrote:
Sun Dec 11, 2022 1:26 pm
Pod153 wrote:
Sun Dec 11, 2022 1:05 pm
Slightly alarmingly it also shows that half my arousals are now centrals,
If you are seeing a lot of arousal breathing with a lot of centrals flagged then those centrals are a symptom of the multiple arousals and not real asleep centrals. You have to be asleep for a central to matter when flagged. Awake/arousal centrals don't mean anything except poor sleep quality.

The machine only measures air flow. It has no way to measure anything else much less if we are asleep or not.
It can and will flag awake/arousal breathing irregularities as some sort of apnea event and it's common to see arousal centrals during arousal breathing.

What is more worrisome is that your sleep quality has deteriorated and now you are spending a lot of time awake or semi awake with the machine on.
This makes a ton of sense, thank you. Once I've figured out SleepHQ I'll confirm this one way or another, but it totally checks out.

I'm not sure I really have a baseline for my sleep quality to have deteriorated from. I have only had one night of sleep longer than an hour since getting the machine two weeks ago (which was the night I used a decongestant spray, in which I got 7 hours before it wore off, which was amazing). The clinician at Resmed (who is largely responsible for my follow-up since my consultant is 'not a CPAP expert') told me to keep persisting, so I did, but that just means 90% of my logged hours are awake ones.

I've given up over the last couple of days and just take it off when I wake up after my initial short sleep with it, since at least it gives my nasal inflammation extra time to go down.

I have had a total of 20 hours of sleep in the last 14 days. I wish I was exaggerating. There's a vast, vast difference between the poor-quality sleep that was my usual baseline before CPAP, and this.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pugsy » Sun Dec 11, 2022 2:19 pm

Not all machines are available as a choice in the drop down menu for a choice.
The list is tied to cpap.com available inventory and if they don't sell it....won't be on that menu.

When you can't find your machine just add it to the comments.

The for Her part isn't all that critical unless someone is actually using the for Her mode.

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pugsy » Sun Dec 11, 2022 2:20 pm

What humidity setting are you using?

Does a hot steamy shower help with the nasal congestion at all or does it make things worse?

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pugsy » Sun Dec 11, 2022 2:50 pm

Awake breathing irregularities can fool the machine easily into thinking something is happening when actually only thing happening is we aren't sleeping either well or at all.
Below is a prime example of a ton of awake central flagging.

I had a really bad night in terms of insomnia. Life stressors got in the way and I just could calm the brain down.
I actually never fell asleep at all until after the flagged hyponea (which I wasn't asleep for it either).

So don't worry about your central flagging until you know for sure you are sleeping soundly. All the awake stuff just doesn't count except to point to the problem of falling asleep.

Image

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Sun Dec 11, 2022 3:13 pm

Pugsy wrote:
Sun Dec 11, 2022 2:20 pm
What humidity setting are you using?

Does a hot steamy shower help with the nasal congestion at all or does it make things worse?
Heat and steam makes it worse. Heat in general seems to make it worse. I knew this but I still tried turning the humidifier and heat up high first because that was what everything online said to do, and it was a disaster. I sometimes get up in the morning and step outside or open the freezer door(!) just because the cold seems to calm my nose down slightly quicker.

In general it seems like 'moist but cool' aggravates my nose the least out of everything I've tried so far. I'm at 22C and auto humidity right now and I think it's maybe fractionally better than before.

I haven't tried turning the humidifier completely off, just because every resource for people with blocked nose on CPAP basically says that zero humidity is the devil incarnate and I'm too scared it'll somehow make things even worse than they already are.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pugsy » Sun Dec 11, 2022 3:29 pm

Pod153 wrote:
Sun Dec 11, 2022 3:13 pm
I haven't tried turning the humidifier completely off, just because every resource for people with blocked nose on CPAP basically says that zero humidity is the devil incarnate and I'm too scared it'll somehow make things even worse than they already are.
I hear you but if more moisture causes a problem then just turn it down....maybe try the setting of 2..."auto" setting is equal to about a manual setting of 4.
In terms of hose air temp...turn it off so it doesn't warm the air. The warm hose air thing is only for rain out/condensation prevention as well as comfort. It has nothing to do with therapy.....it's just a comfort setting (which is what the humidity setting is designed for).

If humidity causes discomfort....reduce it or simply don't use it.
Hose air temp...again if it seems to cause a problem it's only a comfort feature along with condensation prevention.

While most people prefer more moisture there is a sizable number of cpap users who don't use any water at all and don't need a heated hose.
Sounds like you might be one of those people and there's nothing wrong with it.

Change the humidifier settings to "manual" and try cutting the added moisture in half by trying the setting of 2. See what happens.
And if you aren't having any condensation to bother you...turn off (or way down) the hose air temp.
I have several friends using cpap who don't use any water at all and prefer it that way. One of my friends only uses water or humidity when they have a bad cold because that is the only time the added moisture is beneficial to them. Are you old enough to know about croup tents???? Same sort of thing...moisture helps when we have a bad cold but otherwise more moisture can cause a problem.

Me...I am at the other end of the spectrum and I max out the humidity setting....I still don't like breathing the warm air though. I actually prefer cooler air going up my nose but with me maxing out humidity and liking a cold bedroom I would be having a cold shower from the condensation if I didn't warm up the air and I like cold showers even less than I like warm air going up my nose so I have learned to be "happy" with the hose air temp quite warm.

You can't sleep with that much congestion....and you gotta sleep first and foremost. You gotta fix the congestion issues somehow so that you can actually sleep and use the machine all night.

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by lynninnj » Sun Dec 11, 2022 8:24 pm

I like your idea of a conference call for mask fitting.

Maybe someone can zoom with you and help you.

I have been reading along and experienced similar issues with a new ffm that I just got and just decided to put it in the closet for another day and stick with my usual lovely N30.

Stepping back since this isn’t about me, to reiterate I think a zoom call would probably help you. (I would if I could but I can’t was my other point).

Good luck.

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by ozij » Sun Dec 11, 2022 11:16 pm

If you're being checked again for turbinate reduction, that means some of your flow limitations could be a result of the structure of your airway.
CPAP therapy can't do a thing about structural problems.
ResMed machines on auto mode are extremely responsive to what they identify as flow limitations.
Which mean they'll raise the pressure as long as they see them - and in your case, the machine will just blow in more and more air = pressure runaway.

First thing I'd do the way things are now: I'd cap the pressure. For staters, I'd put it at the median -- possibly even less - and see if you manage to sleep somewhat better. The higher pressure isn't doing you any good at this point.

Second thing: Does a different FFM cost as much as a custom MAD? I use a ResMed F30, they have a measurement template for you to use before you order. It does not "squish" my lips shut, I don't have to hurt my gums, and when fitting it - I can gently let my mouth drop open, or open my lips to make sure it doesn't leak.

I'm a side sleeper, but do the fitting lying on my back.

Another very important thing: the type of pillow for my head.

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Pod153
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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Mon Dec 12, 2022 12:41 am

Well, I just got 3.5 hours sleep with the L Dreamwear full face cushion. Unsure what my leaks were like at the moment but subjectively definitely an improvement. Weird since nothing about me is particularly large (other than my sense of frustration, at this point, ha ha) but who am I to mess with a slightly-less-awful thing.

However my blocked nose is back as ever and even though I can now breathe through my mouth on it, it still feels like there is no chance of me falling asleep with it again now I’ve woken up once. My sleep quality still feels far far worse with it than without it. Time to try desperately to squeeze in an hour without it I guess.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Mon Dec 12, 2022 12:53 pm

ozij wrote:
Sun Dec 11, 2022 11:16 pm
If you're being checked again for turbinate reduction, that means some of your flow limitations could be a result of the structure of your airway.
CPAP therapy can't do a thing about structural problems.
ResMed machines on auto mode are extremely responsive to what they identify as flow limitations.
Which mean they'll raise the pressure as long as they see them - and in your case, the machine will just blow in more and more air = pressure runaway.

First thing I'd do the way things are now: I'd cap the pressure. For staters, I'd put it at the median -- possibly even less - and see if you manage to sleep somewhat better. The higher pressure isn't doing you any good at this point.

Second thing: Does a different FFM cost as much as a custom MAD? I use a ResMed F30, they have a measurement template for you to use before you order. It does not "squish" my lips shut, I don't have to hurt my gums, and when fitting it - I can gently let my mouth drop open, or open my lips to make sure it doesn't leak.

I'm a side sleeper, but do the fitting lying on my back.

Another very important thing: the type of pillow for my head.
I'm not actually sure how high the pressure is getting - I think the highest I've seen it is 12. I'm using the For Her mode which I think is supposed to be more sensitive to flow limitations, and it suddenly occurs to me that maybe I should switch it to the regular Autoset mode and see if that's any more tolerable, perhaps as well as lowering the maximum pressure.

The Dreamwear also has a measurement template, but it's the same as the Resmed one - it considers the width of your nose, and nothing else. My nose is a solid M by the Dreamwear measuring tool, and an M by the Resmed one - but the Dreamwear L also has a few extra millimetres of vertical height compared to the M, which is the difference between me being able to open my mouth or not. I have no way of knowing if the F30 (or F30i, which would be my preference) is the same. I guess maybe my mouth is further away from my nose than average?!

The Dreamwear mask can be bought as a pack with multiple sizes (which is what I did) but the Resmed one is one size only. At this point maybe it's worth getting a few different sizes and just hoping one of them fits.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by ozij » Mon Dec 12, 2022 5:27 pm

Pod153 wrote:
Mon Dec 12, 2022 12:53 pm

I'm not actually sure how high the pressure is getting - I think the highest I've seen it is 12. I'm using the For Her mode which I think is supposed to be more sensitive to flow limitations, and it suddenly occurs to me that maybe I should switch it to the regular Autoset mode and see if that's any more tolerable, perhaps as well as lowering the maximum pressure.
"For her" also keeps the minimum pressure higher if it identifies x obstructions within y time [don't remember the numbers]. And if it misidentifies -- your stuck at the higher minimum pressure for the rest of that night.
I have no way of knowing if the F30 (or F30i, which would be my preference) is the same. I guess maybe my mouth is further away from my nose than average?!
Measured the distance between the upper and lower inside edge of my M sized F30's silicon seal: it's about 3.2cms - which google tells me is 1.26 inches. How does that compare with the Dreamwear?

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Wed Dec 14, 2022 3:17 am

I slept about 40 minutes last night. Nose seems to be getting more and more blocked. I have what feels like a sinus headache 24/7 now.

I can’t get care. My consultant is too busy to see me and my appointment to see if I need turbinate reduction has been moved back to the new year. My GP says to speak to my consultant. ResMed say to speak to my consultant.

The thought of only getting an hour of sleep for another month is making me feel a bit suicidal and thats scaring me? I just can’t seem to regulate my emotions at all now I can’t sleep. Everything feels impossible. This basic basic part of being alive and resting and restoring if just gone and every day my ability to think and reason gets worse and worse. I don’t feel like myself any more. I know this isn’t what this forum is for but I just don’t know what to do. This level of insomnia is not something I’d ever experienced until the CPAP blocked up my nose and it’s horrendous.

I can’t get a seal with any of the sizes of fill face mask any more. Don’t know why it’s just not working. If I open my mouth it comes off. Pointless.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by ozij » Wed Dec 14, 2022 6:45 am

A week ago I said you sound like you need a break from CPAP.
So now I'm saying it again.

Take a break. Get yourself back to where your nose is functioning better.
Fighting the CPAP and mask won't lead to progress.
Pod153 wrote:
Wed Dec 14, 2022 3:17 am
This level of insomnia is not something I’d ever experienced until the CPAP blocked up my nose and it’s horrendous.
Tell all your doctors that you're not using CPAP until they give you a solution to your blocked /blocking nose.
Pod153 wrote:
Wed Dec 14, 2022 3:17 am
I know this isn’t what this forum is for but I just don’t know what to do.
This forum is very much for this. We're here - well most of us are - because we struggled and had a tough time and were discouraged and hoped to find some kind of help -- and eventually we did. This forum is actually one of the places where you'll find people who know and understand how tough this therapy can be before we figure out how to benefit from it.

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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pugsy » Wed Dec 14, 2022 7:27 am

I agree with Ozij...time for a reset for you so you can actually get some sleep and rest.
Take a break from cpap...get your nose back into a more manageable state without all the congestion to deal with.
You need a mental and physical break from the battle so you can regroup.

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