Is it possible I was misdiagnosed and CPAP is just not for me?

[Pugsy]

But our friend Jason from the link you sent earlier tends to suggest we always turn off EPR.. what are your thoughts on that?

Yeah....I know Jason's thoughts on EPR/exhale relief of any kind...and one of the few things that I disagree with him on.

I think he mainly is against it because it can trigger centrals in some people but I am not sure if there are other reasons.
These sleep techs get a bee in their bonnet about some things and just won't change or allow for exceptions.
In real life the number of people where EPR/exhale relief/bilevel pressures will cause centrals...extremely small percentage of people that exhale relief causes a problem. I don't believe in making a blanket statement against any exhale relief just because it causes a problem in maybe 0.1 % ( I made up that number but it's not a huge number though) of the people who might use it.

I don't agree with everything Jason says or does...and he doesn't agree with everything I say or do.
We just agree to disagree and leave it at that.

I tell people to try everything...EPR on or off and all the settings and see if there is one they like and feel the best with and then use it. Comfort is critical to getting to sleep and staying asleep IMHO and how we get it is fair game to try.
If you can't sleep...none of this really matters does it?
Even if EPR does cause a problem (trigger centrals) but they are maybe using high pressures so it's really hard to fall asleep exhaling against higher pressures there are ways to deal with it. Like maybe use EPR only during ramp and make use of the ramp feature.

Also even for people who have a problem with centrals and bilevel pressures and/or exhale relief sometimes there is a line where they can still use exhale relief all night and not have it be a problem.
I have a friend who gets about 15 centrals per hour all night long with PS pressure support of 4 (think of it as EPR that will go higher than 3) but when we drop the pressure support to 3...no centrals to speak of.
Her minimum pressure starting point is 17 cm....try exhaling against 17 all night without some exhale relief....it's miserable and she just couldn't sleep without the exhale relief.

All EPR does is create a bilevel pressure situation anyway. Creates a pressure for inhale and a different pressure for exhale.
That's why we often called the ResMed EPR feature the poor man's bilevel. It's limited to the 3 cm difference but it is still bilevel.

[Djonne]

Sorry palerider, but I'm clearly NOT putting my pressure at 10... that leads to way, way, way crappier nights and only mouth leaking (even through tape, as I've mentioned a few times)... I have tried that many times... back when I was using the F30 full face mask, I had it set to 10-20 and I was getting CAs all night long... AHI over 5-6.

I agree 100% with everything Pugsy said. I'm quite sure all of my flagged events are arousal related.. they never seem to happen when I'm really sleeping but of course you guys can't see that on my screenshots...., so the CPAP probably even makes me get more arousals. As I have said many times, I even had my best AHIs with a fixed pressure around 6-7.

When I was asking about someone not needing CPAP and still using one, I wasn't thinking it was dangerous or anything, but mostly that it can cause a case like me. For instance, I have a friend who was using CPAP with a fixed pressure of 15 (his machine isn't an APAP) and he lost about 30-40 pounds and all of a sudden he started experiencing what I experience : waking up from blowing air through his mouth and extremely dry mouth... He lowered his pressure first to 13, then to 11 as he lost more weight and it solved his CPAP problem. I'm thinking that's what happens to me. If my APAP reacts to wrongly flagged events, it certainly jacks my pressure up more than what I need...

[Pugsy]

And here is where I disagree with Palerider and the idea to increase the pressure.
It hasn't been proven to me ....yet...that the flagged events are real asleep events.
That's why I want you to learn how to figure out awake vs asleep flow rate/breathing.

You know you aren't sleeping soundly and that means there is a chance that what you see getting flagged and the machine trying to kill with more pressure....might be false positives.
And why I say we need a night with data where you slept solidly (and you verify by looking for evidence of arousal breathing with the flagged events) before the knee jerk reaction to increase the pressure.

If you look at your flow rate and all your events (or the bulk of them) are occurring during obvious arousal breathing...more pressure isn't going to fix them. We have to fix the cause of the arousal first if we can.

I would want proof that the flagged events are the real deal and not SWJ before I go advising more pressure.

I know first hand that the machine can and will flag and respond to SWJ but more pressure won't fix the problem if the problem is false positive flagging.

[Djonne]

Hmm Pugsy, I understand! But honestly, I've never felt anything bad about exhaling against the pressure with EPR turned off... but then again that's while being awake. I the pressure is around 6-8, I barely feel the difference with EPR on.. I certainly don't feel like I need to use force to exhale against the pressure. This being said.. I don't mind EPR either, so I can use EPR for a while with the fixed pressure settings. What would you set the EPR level at? I usually leave it at 2.


EDIT : Just saw your last post Pugsy... Yeah, I totally agree. I think many of my arousals might actually be due to the pressure being too high as well!

[Pugsy]

I REALLY, REALLY like exhale relief....now do I actually "need" it...probably not but I find I sleep better with it.
I actually did an experiment a while back with and without any exhale relief and I found I slept on average 45 minutes to an hour longer with exhale relief than without. Now I don't have a problem not using it in terms of exhaling against the pressure but then my starting minimums aren't very high either.

I would suggest an experiment with EPR....use it for a week at the setting of 2 and see how you do...then another week with it maybe off and see how you do.
All the time concentrate on sleep itself more than AHI.
Though do remember...turning off EPR (or reducing it) does effectively increase the baseline EPAP...which means you are increasing the pressure a bit.

You need to give your experiments a few nights with whatever change you make so that the body gets a chance to adjust to the change. One or two nights simply isn't enough evaluation time because we don't sleep the same each night anyway.
I never change anything based on one night's results unless the results were obviously horribly horrible.

Right now I am more concerned with the crappy sleep than I am about anything else.
Gotta get the sleep first before we can have any chance of optimizing therapy because we need good data to evaluate and date with tons of arousals in it isn't good data.

[Pugsy]

Holy crap...I didn't realize how late it is.
I am off to bed.

I am turning into a pumpkin.

Don't be afraid to add a little OTC sleep aid....we gotta get you to sleeping more soundly so that we can better evaluate the pressure needs.

[Djonne]

I have a prescription for Zopiclone that I take every now and then but it doesn't seem to help, but that's probably due to me sleep being disturbed by the CPAP. Do you know anything about Zopiclone?

I realized I had Benadryl laying around so I just took a good 100mg right now just before bed.. we'll see what happens with that + my fixed pressure of 7 with EPR at 2.

Coming back to the subject of me having OSA and people noticing that I stop breathing while sleeping, I talked to my girlfriend about that tonight and she said that what she used to observe is me really just not breathing... no choking, no attempts of breathing, nothing! So is it possible I only have Central Apnea? Also, most other women who've slept with me used to tell me that I had lots of apneas in the beginning (when we started spending nights together) and that after a while, it was normal.. as if my apneas were triggered by the fact that sleeping with these partners was new. That actually wouldn't surprise me all that much since EVERY little detail that's different in my life can severely alter my sleep. Just to give you an example, whenever I have an appointment before work or anything, I keep waking up every 15 minutes thinking I slept too late...

Do you have any thoughts on that central apnea thing? (Although my study said I had no CAs... but then again, I barely slept! Like I said, my pulmonologist put in a request for a real sleep lab study, but the health care system being what it is over here in Quebec, the test might happen any time between 6 months and 2 years from now and I'd like to sleep better until then )

[Pugsy]

Do you have any thoughts on that central apnea thing?

I don't know if someone else could actually see or would be expected to see the subtle differences that might come with a central apnea vs and an obstructive apnea. My husband told me that I quit breathing but said I never seemed to struggle to breathe...but then I snored like a freight train.
If you had a problem with centrals though....you would see them on these reports in large numbers and I just don't think you have a problem with centrals. This machine you are using can't fix centrals.

I am not familiar with Zopiclone as it isn't available here in the US. It's pretty addictive so the FDA says we shouldn't have it available. Kinda stupid...we have tons of other stuff that are highly addictive we can get our hands on.
All sleeping pills are mainly for help in falling asleep but come up up short in the staying asleep department but Zopiclone says it is supposed to also help with the staying asleep part. I suspect it is far from perfect as most of the RX sleep aids are.
I am currently trying Belsomra RX sleep med because I have been having so much trouble staying asleep myself.
It's a new to the market drug and not supposed to be addictive...The jury is still out on just how well it does.
I got less than 5 hours of sleep last night with it...and 7 hours the night before with it. I have more short nights than I do 7 hours though. Only been taking it not quite 3 weeks now....so I don't know yet how successful it is.
My problem is a combination of things...poor sleep from sleep maintenance insomnia due to pain and maybe a little bit of stress involved. I do well for about 4 hours until the pain meds I take wear off then I start waking up often from pain.
Once I wake up...hard to go back to sleep so just taking another pain pill really doesn't help.
Benadryl helps just about as much...but I still can't get enough hours of solid sleep...I am averaging long term barely 6 hours and that's simply not enough.
A lot of my problems started in March 2020...Covid may be a factor. I was really sick the first week in March but at that time no testing really available where I live and treatment was really limited back then and I wasn't sick enough to be in a hospital. All I know is a lot of things changed after March 2020....my sleep went totally in the toilet...I get short of breath easily....and I have more general aches and pains. Did I have Covid? I don't know but I sure had all the symptoms and hubby had it as well at the same time. In fact we got sick about one hour apart when the symptoms started.
I tried all summer to get an antibody test but just not available where I live and the docs would say "not all that accurate right now anyway".

Now I am older...69 now and with age and the progression of my arthritis...maybe the increased pain is just part of it but there has been a noticeable marked change this past year in my sleep quality.
Stress itself could be a factor...my mom's physical and mental health is failing...she's 88 and some days she doesn't know where she is at. Long story there that I just won't go into but we all know stress will impact sleep quality as well.

There's so much more to getting good quality sleep than we think. It's not all about the airway issues either.
I have been on cpap over 12 years now. It's well treated I know but I still don't sleep soundly enough or long enough.
I have other stuff messing with my sleep that the cpap machine can't fix. So I keep trying other stuff in an effort to improve my sleep. Stuff to help me sleep through the pain better so that I don't do so much tossing and turning and have so many wake ups. 75% of my AHI is always obvious arousal related false positives and my AHI averages between 1 and 2 most nights. On occasion I might be sub 1.0 AHI but not often....but since I already know most of any AHI is false positive I know that my poor sleep isn't airway related.

You may have something else causing your poor sleep....OSA may or may not be your main problem.
You really need a sleep study that measures actual sleep though...either in a lab or a home study that is more comprehensive to know for sure IF your have OSA and how bad it is IF you have it.
And of course there's no reason to not think about the possibility of your having more than one problem with your sleep.
OSA and sleep maintenance insomnia from some other reason than OSA.

Those people who you read about who get started on cpap and become a new man or woman....immediate marked improvement in all their unwanted symptoms....actually those people are extremely rare and lucky. Most likely they only had the one problem...sleep apnea and the machine fixed it and thus huge improvement right off the bat.
Most people do have more than one problem going on and while we can fix one problem with cpap...it's not always so easy to fix the other problem(s).

I think you probably do have OSA and you probably slept more than you think in the home study but we can't prove it and for sure don't know how severe or not it might be.
You might also have a UARS component going on and that opens up a whole new can of worms. It's even harder to diagnose and treat.

Let me know how things went with the Benadryl and the fixed pressure. I would like to see the detailed report along with your own subjective feelings about how it went.

[Pugsy]

Any chance any sleep lab does a Type 2 home sleep study up in your neck of the woods?

[database]

Funny you should suggest a fixed pressure of 7 with EPR.. that's exactly what my respiratory therapist at the DME suggested a few weeks back... I might as well try that! But our friend Jason from the link you sent earlier tends to suggest we always turn off EPR.. what are your thoughts on that?

If you've never tried EPR off before then you have no reason not to at least try it. In the worst case it doesn't help and you learn you want to keep it on. That's valuable information, and you can move on to test other things like finding the mask you like best, or controlling mouth leaks.

In my case, after struggling with CPAP not helping at all or making things worse for 8 months on default settings, following Jason's advice and turning off FLEX/EPR resulted in the first morning I ever felt the CPAP machine actually helped at all. If you're particularly sensitive to pressure changes like me, FLEX/EPR are horrible because they are constantly making the pressure change, which just gave me more arousals. Turning it off cut my events down to 1/3 of what they were with FLEX/EPR (and yes, I tried both FLEX on Respironics and EPR on Resmed). That doesn't mean you'll definitely get the same improvement but the only way to improve your treatment is by experimenting and optimizing your treatment to what works best for you.

[Djonne]

Pugsy, I'm sorry for all your problems :/ I did have Covid (tested positive) back in October but I don't think I have any sequels, but I'm less than half your age so... I guess that explains it. I also understand about waking up from pain as I have a herniated disk in my neck, but for the past two years it hasn't been too bad so I don't think it contributes to my sleep problems!

Now about the Benadryl and the fixed pressure, I'm pretty sure I slept much better last night, although it still took me pretty long to fall asleep, but for once I was awoken by my alarm clock!! I usually wake up so often, then check the time and realize it's time to get up... But one thing I find funny is that when I wake up from my alarm clock and most likely sleep better, I feel MUCH more sleepy when I wake up and I snooze and go right back to sleep, which NEVER happened when I had the auto settings and kept waking up. Also, I had much less leaks. My machine says 1L/min, but I haven't checked the OSCAR reports yet... Do you want me to check it out and put it up here today or should we wait a few days to notice a trend?

And yes, the sleep lab study I'm gonna get is a full polysomnography, which I guess translates to Type 2. My pulmonologist told me I would have the sticky pieces on my head and that everything would be properly diagnosed because they'll be able to know for sure whether I'm sleeping or not.


Database, I have tried EPR on and off and never properly noticed a difference... I'll keep it on for the first week and then turn it off next week while keeping the same pressure to see if it makes any difference!

[Pugsy]

Can you go ahead and grab a screen shot of last night's detailed report? I would like to see it.
Also when you have time....go scouring the flow rate for evidence of arousal breathing segments....with or without any flagging of anything.
See if you can spot when you actually went to sleep as well.

We actually changed 2 things...added Benadryl and changed to fixed pressure. At some point we probably need to remove the Benadryl and see what happens with just the fixed pressure on board but I would like 2 or 3 more nights just to see if we can spot any trends.

I don't like to put all my eggs in a one night's report...I never know if it was a fluke or not because we don't sleep the same each night but it does sound like maybe you slept a little more soundly once you went to sleep.
Might try taking the Benadryl a bit earlier to see if that helps lessen awake time in bed.

[Djonne]

Alright, so here's the full chart and a few examples of arousals and flagged events. The full chart is a bit chaotic because I had used the CPAP earlier the same day, and then I tried sleeping again a bit after initially waking up... but the stops (except for one) aren't proper stops in the use of therapy. There's one stop in the middle that happened when my girlfriend woke up and I went to take a leak

[Djonne]

More examples!

[Pugsy]

When you do snippets...be sure to include the time so I can identify which flagged event or whatever by time.
The snippet with the 2 OA flags at the top...so obvious arousal breathing flags...SWJ....not asleep. Those 2 would be removed from the AHI evaluation for sure.
Some of the others kind of iffy and you have zoomed out a bit too far to really evaluate well. So hard to say for sure.
Can't see well enough.

With the fixed pressure I wanted to make sure it was high enough to deal with the OSA and if the real asleep AHI was a bit high...might need more pressure.

The OA at what appears to be shortly after 5:50 does appear to be real asleep...
but the events after 6:12....2 OAs and 1 CA.....I am not sure you were sound asleep. For sure the first OA is preceded by arousal breathing.

You need to zoom in closer and be sure to include the time stamp for future flow rate sharing.