First time therapy, settings and progress

[jcp519]

For mouth tape to work, you'll want to cover your mouth completely. My mouth has to be completely sealed up or I'll get lots of mouth leaking.

[Schernenk]

My wife tells me my mouth leaks, even in the middle of the day, she thinks maybe I should wear mouth tape all day LOL

[BoxcarPete]

The proof of a tape job is to puff up your cheeks a little and gently blow out against the tape, keeping your whole face relaxed while you do it. If you don't leak any when doing this, you won't leak any when you do it at night either.

As for your chart, I'd like to say the overall spikiness is encouraging, but the scale of the chart is a little higher than your previous ones, so I don't think it is really better after all. Raising the pressure isn't the most efficient way to get more ventilation, I'm starting to think that you might be a good candidate for a bilevel machine where we can tweak the pressure support to a much finer extent. They can be a challenge to get prescribed in some cases though, plus I've never used one so I won't be able to help with all the details, so we can try soldiering on with the autoset for now. What part of Canada are you from? If you're close to the border it might be possible to schedule a consultation with a US doctor and pay out of pocket for him or her to review your data so far and get you a bilevel prescription. I believe another one of our members from Montreal was considering it, but I don't know if that saga has come to a conclusion or not.

[Schernenk]

The proof of a tape job is to puff up your cheeks a little and gently blow out against the tape, keeping your whole face relaxed while you do it. If you don't leak any when doing this, you won't leak any when you do it at night either.

As for your chart, I'd like to say the overall spikiness is encouraging, but the scale of the chart is a little higher than your previous ones, so I don't think it is really better after all. Raising the pressure isn't the most efficient way to get more ventilation, I'm starting to think that you might be a good candidate for a bilevel machine where we can tweak the pressure support to a much finer extent. They can be a challenge to get prescribed in some cases though, plus I've never used one so I won't be able to help with all the details, so we can try soldiering on with the autoset for now. What part of Canada are you from? If you're close to the border it might be possible to schedule a consultation with a US doctor and pay out of pocket for him or her to review your data so far and get you a bilevel prescription. I believe another one of our members from Montreal was considering it, but I don't know if that saga has come to a conclusion or not.

I am quite close to the Washington State and Idaho borders, like close enough that I will do an overnighter with the family to Spokane once in a while or whip down for a concert.  That said I'm quite certain I can have my general practitioner write me a prescription for a BiLevel machine, he is pretty easy going, if I chat with and review my OSCAR I am sure it would not be a problem.  

Looks like ResMed makes the AirCurve 10 which looks identical to the AirSense 10 except in a BiPAP machine.  Sounds like BiPAP is typically prescribed for people "with more complex sleep-related breathing issues, such as those with certain types of central sleep apnea, or people whose OSA does not respond to CPAP treatment." 

When you say spikiness, you mean in general?  Time at pressure, pressure, flow rate etc?  I just want to know what I'm looking for on the chart so I am not constantly bugging the forum.  I would think I should soldier on for a bit longer with the APAP, try some full mouth taping and see if I actually start to feel better.  As it was pointed out to me it can takes weeks or months to acclimate to the APAP, but if my OSCAR's are saying something different I'm game to try something else. I'd also happily send my OSCAR's via email to a specialist across the border too.

[BoxcarPete]

If you have good rapport with your primary care doc and can get a prescription for bilevel that way, that's excellent news and a good thing to keep in your back pocket. I've heard that people often struggle to get things done in a timely fashion in the Canadian system, so a US consult would be a further option if you end up getting stonewalled at home. No guarantees that a US doc will be any more open-minded than your local MD anyhow; the advantage is that you'd be able to look into it ahead of time and pick one guy or gal that would be agreeable and then you get your magic piece of paper that says you can buy what you need.

It is a little early to give up on acclimating to APAP, and the indication for bilevel isn't particularly strong, so sticking with APAP is a good option unless you're really not feeling the benefits after another month or two. You're correct that bilevel is effectively the same thing but with more capabilities as to how breath support is delivered. You have three: 1, 2, and 3. Aircurve can adjust the PS by increments of 0.2, go much higher in value, as well as some other finer details that adjust the handoff between EPAP and IPAP.

Spikiness is something I talk about when I see segments of sleep interrupted by a spike in flow rate from a deep breath. Usually that comes with an arousal so it's undesirable for it to happening a lot throughout the night. I'll be honest that my proposed reason for your apparent sleep interruptions is somewhat speculative, so don't let me make you a guinea pig and force you to jump through hoops for more advanced machines to try more things. If you're reasonably happy with your results so far your charts are looking decent for the most part, but I don't like to see those arousals and it's not clear why they are persisting.

[Schernenk]

If you have good rapport with your primary care doc and can get a prescription for bilevel that way, that's excellent news and a good thing to keep in your back pocket. I've heard that people often struggle to get things done in a timely fashion in the Canadian system, so a US consult would be a further option if you end up getting stonewalled at home. No guarantees that a US doc will be any more open-minded than your local MD anyhow; the advantage is that you'd be able to look into it ahead of time and pick one guy or gal that would be agreeable and then you get your magic piece of paper that says you can buy what you need.

It is a little early to give up on acclimating to APAP, and the indication for bilevel isn't particularly strong, so sticking with APAP is a good option unless you're really not feeling the benefits after another month or two. You're correct that bilevel is effectively the same thing but with more capabilities as to how breath support is delivered. You have three: 1, 2, and 3. Aircurve can adjust the PS by increments of 0.2, go much higher in value, as well as some other finer details that adjust the handoff between EPAP and IPAP.

Spikiness is something I talk about when I see segments of sleep interrupted by a spike in flow rate from a deep breath. Usually that comes with an arousal so it's undesirable for it to happening a lot throughout the night. I'll be honest that my proposed reason for your apparent sleep interruptions is somewhat speculative, so don't let me make you a guinea pig and force you to jump through hoops for more advanced machines to try more things. If you're reasonably happy with your results so far your charts are looking decent for the most part, but I don't like to see those arousals and it's not clear why they are persisting.

Ah I see, like when you saw that 40 minute span of "deep sleep" that one night, the flow rate was nice a constant for a good chunk, but last night was broken up.  The way things work up here is our GP is the "first line of defense", he's going to know a little about a LOT of things.  When things get complex the GP would typically do a referral to a specialist, that's what he did for my in home sleep study, so I could still likely get another referral for a true overnight sleep study to see exactly what is happening at night.  That would likely give some more insight into what's happening, to see if I'm dealing with something a little more then the usual type of OSA.

As far as happiness with the results go, I have seen no discernable difference in how I feel compared to pre APAP.  I am growing pretty accustomed to having it on, that's for sure, so I have been putting off the lack of results to more of a "subconscious" thing that's happening, I.E. I can fall asleep and manage pretty well with the APAP on but my brain isn't letting me quite get there yet at night due to the apparatus being on, keeping my out of that deep sleep.  

The reason I could see to try a BiPAP would be continued lack of results with the APAP (still feeling tired), possibly due to a more complex form of APNEA.  This could maybe be delved into with an overnighter sleep study.  I will say that when you told me to turn on the EPR on the AirSense 10 it made quite a difference in my charts, pretty much immediately.

[BoxcarPete]

That's not terribly different from the way things work over here, except for the fact that if you need something and have cash in your pocket, you can ignore your doctor and call specialists yourself. The horror stories about the million dollar ER visit or hundred dollar asprins are mostly insurance billing nonsense, if you say up front that you can pay cash for services most things instantly become downright reasonable in cost.

That's a good plan, since your symptoms are not seeing much improvement and EPR made a huge difference, it's proof that bilevel is helpful and working for you. Because the ResMed machines use the same algorithm for EPR and pressure support, but the APAP machine is very limited in how it can apply that bilevel pressure, a true bilevel machine will allow you to continue adjusting and fine tuning the pressure support to get you the results you truly need. Typically the "more complex form of apnea" refers to a mix of obstructive and central events. You could even make that argument with all those purple flags in your early charts (although we here suspect that they were misattributed); whatever convinces the powers that be to get you what you need is worth trying. I doubt that further sleep studies are warranted, but a PSG might be worth doing if your doc orders it.

[Schernenk]

Thanks so much for the dialogue, I feel like I would have been going through this by myself (and failing) if I didn’t have this support/sound board.

And whatever anyone tells you about our medical system in Canada being the cat’s meow….its in horrific shape, it’s “free” but the wait times are terrible and access to specialized care is very difficult to get unless you have something very acute and life threatening.

I did full mouth tape last night with a slight boost to pressure baseline and actually feel reasonably well today. But guess what?? I forgot to put my memory card back in the CPAP yesterday so no OSCAR to look at (face palm). 

I will see what happens tonight, and I may bump my pressure another .5 or so (and make sure the memory card is in). Any downside to higher baseline pressure as long as I tolerate it and don’t have a lot of leakage?

I’m hoping the way I feel today isn’t a one off and actually a sign of overall improvement.

[BoxcarPete]

Leakage through the mask and through your tummy are the two major downsides of higher pressure. OSCAR can tell you about the one, you will know when the other becomes a problem.

Happy to help you muddle through it all. Getting stonewalled from "advanced" care due to having a mild-moderate need is exactly why I suggested a consult with a US doc as an option if it becomes necessary, though I hope you can discuss with primary care and make it clear that you can order the machine you need on your own if he writes the prescription for the higher level machine, which he should be able to do. Downside is that I don't know if there is an equivalent to the AS10 card-to-cloud, which is the current gold standard for self-directed care, among bilevel machines. The full version of the bilevel is likely to put a significantly larger hole in your wallet, which is another reason to try making your current machine work for you. But if you need it, and there's nothing else that will do the job properly, it's a worthwhile investment.

[Schernenk]

There is the Aircurve 10 series from Resmed which appear to be identical save for the bi level feature, to the AS10. They make an auto and ASV model, though I don’t think they have the card to cloud option (which is ok, you can turn off the ability for it to communicate through cellular I think, just adds cost). 

Will keep up with the mouth tape tonight and see what my OSCAR says tomorrow, hopefully things keep looking up. 

Cheers!