CPAP therapy plain not working (various problems)

[Djonne]

Hi! I've been using CPAP therapy for over 5 months and I've never had any satisfying results, if anything I'm worse than before on all aspects. I've been getting AHI's anywhere between 3 and 7, and I was at about 6 on my sleep test and 16 when sleeping on my back, so the therapy brings no improvement whatsoever.

I started out with the P30i nasal pillow mask and an automatic pressure ranging from 6 to 20 and my AHI's were always between 6 and 7 for a few months, with unacceptable leaks, all of those leaks being mouth leak. Then I tried the F20 and F30 full face masks and with those of course I had less leaks, but my AHI's were still in the 4-6 range, using the same pressure range as with the first mask.

My pulmonologist then had me try fixed pressures of 9 and 10 and I still had the same results. The full face masks being very uncomfortable, I started using the N20 mask (which is still the one I use today), and obviously it's been way more comfortable, but I still get unsatisfying AHIs and way too much leak.

I've been trying ALL sorts of pressure settings, fixed pressures of 9 and 10 like the doctor suggested, but I was leaking so much, so I then tried lower pressures, and then automatic pressures with ranges like 4-10 or 6-10, 6-8, etc. and the results are ALWAYS the same. I always leak through my mouth, rendering therapy ineffective. I've even tried taping my mouth several times and I still manage to make air leak through the tape.

I've been thinking that maybe I should put myself on a very low fixed pressure (5 or 6) for a few weeks and then very slowly increase until I can get good therapy, but I don't know if that would make sense.

At this point I'd welcome just about any advice regarding this.. both my pulmonologist and respiratory therapist being absolutely useless in this (pulmonologist flat out suggested I sell my CPAP since it's not working).

So that's about it, let me know if there's anything else I could add that could help any of you help me !

Thanks in advance!

[zonker]

Thanks in advance!

welcome to the zoo!

don't know why your dr. has you trying random various and sundry pressures. i would suggest you switch to apap mode rather than cpap. set your minimum at 7 and your maximum at 20.

let it go for three nights, take screen shots then post them so we can see how you are doing.

good luck!

[LSAT]

I 100% agree with the Zonk. No reason to use a fixed setting when you have the Autoset machine. If it bothers you to set the max at 20, you can set it at 12...it will not make a difference in your case.

[Dog Slobber]

The three graphs you posted demonstrate pretty conclusively that your CPAP therapy has been working.

I'm not suggesting it's optimum, it's not.

But it's a far cry from what your narrative suggests.

I also think your expectations may be a little unrealistic.

[Miss Emerita]

When you post your next batch of charts, could you squeeze in the flow limitation graph? (Grab the horizontal gray bars separating the graphs and push them up to make room.) Additional information that would help:

Are you feeling any more rested with PAP treatment?

Why do you regard the leaks as unacceptable? Is it because they are waking you up?

I notice that you don't have regular times at which you go to bed and get up. Have you tried being more consistent, making sure to give yourself time for 8 hours of sleep? Greater consistency probably won't affect your AHI, but it is one of the key pieces of guidance for feeling more rested during the day.

[kteague]

Regarding your mouth leaks... You may have seen this response from me before on other posts, but in case you haven't run across it, here's my take on it. Practice and perfect the art of keeping your tongue sealed to the rook of your mouth. Mastering this changed my CPAP experience. I have used tape, denture adhesive, headbands around my mouth - you name it. Learning the tongue trick set me free from all external efforts to stop mouth leaks. That was in conjunction with side sleeping and using a firm flat pillow so that gravity doesn't cause my jaw to drop, and sleeping on the edge of the pillow to where it collapses just a bit to alllow my face to tilt downward thus keeping my tongue forward. To me it is easier to keep air out of the mouth than to keep it from escaping the mouth. Can't swear it will work for everyone, but worth a try to see if any of these self-help techniques improve your experience.

As to your AHI, others on here could better direct you but one can tell from the machine data if events appear to be while asleep or simply awake breathing. Maybe your AHI is not as much as you think it is. Granted, it is not bad already, but I wouldn't be satisfied there if I could get it even lower, so I can relate to your desire to see it lower. I'm guessing you've already ruled out other contributors to non refreshing sleep. Quantity and quality both matter. Medication or supplement side effect? Alcohol? Other contributing sleep disorders?

Best wishes figuring it all out. Sometimes it takes a while to get in a groove.

[Djonne]

Okay, I'll reply to everyone one by one (I actually have no idea how to properly use a forum, so if I'm doing it wrong, please let me know!)

Zonk : The reason why I use fixed pressures most of the time is because I was getting absolutely TERRIBLE results when using the 6-20 initial settings I had, My AHI was over 7 on average, and my leaks were around 40L/minute. She considered the treatment was not working at all, even saying I was worse on CPAP than without it and suggested the changes in pressure throughout the night most likely wake me up. Since I'm a SUPER light sleeper, she might be right. Whenever the pressure is above something like 7, I leak like mad. I did try 6-20 and 7-20 this week and it was terrible.. worst nights of the last few months... like I said, even leaking through the tape and everything. My respiratory therapist suggested I try a fixed pressure of 7 with an EPR of two... but I've read everywhere that EPR should be disabled.. what do you guys think of that?

LSAT : If I set the maximum at 12, it will be at 12 most of the night and make me leak like crazy. I absolutely don't know why it's doing this in my case, I feel like the auto mode just doesn't work since I get better AHIs with lower fixed pressures than whenever I try the auto mode... I don't know if my machine is failing or my sleep is so messed up that it doesn't pick up on the right things with me... but even my respiratory therapist and pulmonologist are both puzzled.

Dog Slobber : The reason I say the therapy isn't working is because I know what my data was like on the initial test and my AHI wasn't all that high. In TOTAL I had an index of 16, but most of it was what they call hypopneas with autonomous micro-awakening (liberal translation from French here since all my results are in French... sorry if that's a wrong term). I had 10 of those per hour and only 2.5 obstructive apneas. My doctor says my treatment would make a difference in my life only if I get below 1 AHI, above that she considers it not working and she even suggested I sell my machine if I can't get it under 1, reinforcing the fact that my disorder isn't detrimental to my health in general considering what she saw in the results.

Miss Emerita : Okay, I'll do that whenever I post more graphs. Regarding whether I feel more rested the answer is a big loud and crystal clear NO! I actually feel more tired than I ever have and have the poorest quality of sleep I've ever had, which means quite horrible since I've never slept well in my entire life apart from a few golden weeks every year ! Also, I regard the leaks as unacceptable because I open my mouth and just spit air for minutes on end, getting my mouth totally dry and waking my girlfriend up in panic telling me to breathe, every night! Unfortunately my work schedule doesn't really allow me to have regular bed times every day, but I do my best... might have been a hectic week.

kteague : How do you practice that? I do actually fall asleep every night doing exactly that and also sleeping on my right side, but always find myself sleeping on my back with my mouth leaking. How the heck can you control that while sleeping?! I also try to sleep on my side and I do have a firm flat pillow! And yeah I've ruled out pretty much everything else regarding my non-refreshing sleep... I even stopped taking an anti-depressant I was taking for anxiety, fearing it might make me sleep worse. Quitting that hasn't really improved anything yet, but it wasn't helping at all while I was taking it, so no regrets here! I don't drink and never consume caffeine past the first 3 hours I'm up in the day, but as I said above, I've never slept well. My mom would tell you I had trouble sleeping as early as 2 years old.. and it never stopped. I had entire nights of insomnia from my teens onward.

Okay, I think I answered to everyone here?!

If this means anything, I'll just add a few details about myself : I'm 33 years old, 6'1 and about 215 pounds.. so a bit overweight but nowhere near obese. Let me know if any other information could help!

[zonker]

Zonk : The reason why I use fixed pressures most of the time is because I was getting absolutely TERRIBLE results when using the 6-20 initial settings I had, My AHI was over 7 on average, and my leaks were around 40L/minute. She considered the treatment was not working at all, even saying I was worse on CPAP than without it and suggested the changes in pressure throughout the night most likely wake me up. Since I'm a SUPER light sleeper, she might be right. Whenever the pressure is above something like 7, I leak like mad. I did try 6-20 and 7-20 this week and it was terrible.. worst nights of the last few months... like I said, even leaking through the tape and everything. My respiratory therapist suggested I try a fixed pressure of 7 with an EPR of two... but I've read everywhere that EPR should be disabled.. what do you guys think of that?

your apnea needs more pressure in order to "bust on through". you aren't going to be able to treat your apnea without that pressure. and yes, it's going to come down to a matter of getting used to it. your body can aclimate to the pressure. all the machine is trying to do is keep your airway open. i know at first this seems like a LOT more pressure.

i'm a light sleeper as well. my current pressure to treat my apnea is a minimum of 18 and a maximum of 20.

the changes in pressure throughout the night is a nessecary and vital part of treatment.

i have no idea where you read that about epr nor in what context. it's an individual thing and you can certainly try it. what have you got to lose?

i still maintain that you set the machine at 7-20 and post charts so we can see the breakdown of events.

good luck!

[Djonne]

As I said earlier, I was on 6-20 for 3 months and had much worse AHIs and tons of leaks. I can set it that way for one night and show you. But I know what with 6-20 I was averaging 7-8 AHI and it was causing lots or CAs too. Last night I was on 5-8 and still had way too much leaking.. I'm pretty sure the leaks are the problem.

I thought it was a matter of getting used to it, but shouldn't 3 months at 6-20 be enough? I figure if an automatic setting like you suggest is the answer for me, it would have worked way before. But I understand that what most people think... my pulmonologist and respiratory therapist both say it works for MOST people, but both agree I'm an exception and the situation is way more complex with me.

[Djonne]

Here I attached last night's chart and an example of last week when I was on 8-20, and you can see that all the increased pressure manages to do is create more leaks... it's not helping bust through any apnea, because all I do is open my mouth and spit it out.. even with my mouth taped as I said. Last night I was on 5-8 and still had lots of 'large leaks' and I woke up with terribly dry mouth...

Here

Capture.PNG (29.43 KiB) Viewed 1696 times

is an example of what happens whenever the pressure just reaches a mere 8... as you can see the leak just increased and the flow totally decreases... I'm not sure it's helping anything. And if it goes higher, it just increases that, creates central apneas, unclassified apneas, etc. It's just pure chaos.

[SleepGeek]

welcome to the zoo!

[Dog Slobber]

Judging by your charts:

• You need to increase your minimum pressure, I would start at 8
• You need to increase your maximum pressure, I would start at 12, normally I would put it at 20, but until you have your leaks sorted out, we should cap it.
• You need to fix your leaks, if you can't learn to stop mouth-breathing then you need to find a FF mask that works for you

[Djonne]

I have two face masks and I've used them for a while with the automatic pressure 10-20 and I had the same results, with a bit less leaks... still no lower AHIs (always ranging from 3 to 6, with lots of central apneas). The only times I've had lower AHIs were with a fixed pressure of like 6 and the nasal mask!

With the nasal mask, I don't mouth breathe.. that's not the problem. I just stop breathing and spit air through my mouth... That's mainly why I was thinking that maybe I should use fixed pressures for a while to slowly get used to not do that. I've had nights with almost 0 leaks with a fixed pressure of 6, but whenever it's higher, I just leak like mad, leading to crappy nights and higher AHIs. As I said earlier, I've always had TERRIBLE sleep and the slightest thing can mess me up when sleeping, hence why I think maybe I should sloooooowly increase my pressure until it needs what my body needs to treat the apnea. I know someone who got started with a fixed pressure of 15 and the P10 mask and it worked instantly.. if I try that, I just suffer all night, leak like mad, get central apneas all over the place and whatnot.. It's not helping whatsoever.

Obviously if I could stop leaking through my mouth with the nasal mask things would get better... but it's been 5 months and nothing has improved in that area... How do people learn that?!

EDIT : Oh Dog Slobber, I just saw that you edited your post and added numbers... I can try 7-12 pressures. I'll do that tonight and post the chart tomorrow. But as you saw from my chart of last night where my pressure was from 5 to 8, I had massive leaks all over the place.. so my guess is that it'll be the same, or just worse with 8-12 with a similar AHI. But maybe I do need to get used to it and keep the same settings for a while.. I've been changing settings a LOT since I learned how to do it, and maybe that's also part of what messes me up?!

[Dog Slobber]

I have two face masks and I've used them for a while with the automatic pressure 10-20 and I had the same results, with a bit less leaks... still no lower AHIs (always ranging from 3 to 6, with lots of central apneas). The only times I've had lower AHIs were with a fixed pressure of like 6 and the nasal mask!

With the nasal mask, I don't mouth breathe.. that's not the problem. I just stop breathing and spit air through my mouth... That's mainly why I was thinking that maybe I should use fixed pressures for a while to slowly get used to not do that. I've had nights with almost 0 leaks with a fixed pressure of 6, but whenever it's higher, I just leak like mad, leading to crappy nights and higher AHIs. As I said earlier, I've always had TERRIBLE sleep and the slightest thing can mess me up when sleeping, hence why I think maybe I should sloooooowly increase my pressure until it needs what my body needs to treat the apnea. I know someone who got started with a fixed pressure of 15 and the P10 mask and it worked instantly.. if I try that, I just suffer all night, leak like mad, get central apneas all over the place and whatnot.. It's not helping whatsoever.

Obviously if I could stop leaking through my mouth with the nasal mask things would get better... but it's been 5 months and nothing has improved in that area... How do people learn that?!

EDIT : Oh Dog Slobber, I just saw that you edited your post and added numbers... I can try 7-12 pressures. I'll do that tonight and post the chart tomorrow. But as you saw from my chart of last night where my pressure was from 5 to 8, I had massive leaks all over the place.. so my guess is that it'll be the same, or just worse with 8-12 with a similar AHI. But maybe I do need to get used to it and keep the same settings for a while.. I've been changing settings a LOT since I learned how to do it, and maybe that's also part of what messes me up?!

• Yes, you need to keep the same settings, a single nights data means nothing. We need trends.
• We need to get you to sleep, AHI is unreliable and not meaningful if one is awake, or continuously drifting in and out of sleep.
• There are reasons that EPR should be turned off (for some). But for many ,it can mean the difference between tolerating and not tolerating CPAP. I would set it to 3.

But the priority is fixing your leaks, for better therapeutic value, but more importantly to help you sleep.

I think we need to throw out all your old settings, thoughts and perceived experiences. We don't know what the exact settings were, we couldn't see the mix of CA, OA, H, leaks and more importantly when they were happening. We didn't even know if you were sleeping. I also thing there is *a lot* of influence by frustrations with historic treatment. Let's start over.

Then post a chart of your full night.

[Djonne]

Yeah I know the most important is fixing my leaks and that's why I've been trying taping my mouth closed with surgical tape, but I manage to blow air through anyway so it's not helping at all.

Speaking of EPR, in my initial months using therapy, I was on auto pressure 6-20 and I had an EPR of 3 and my results were terrible, but I can try it again... I had the P30i mask back then and now I have the N20, so that's a different variable. But you'd really set it as high as 3?

About forgetting all past experiences and stuff... that's what I keep trying to do yeah! But I can tell you that all the leaks were happening when I was asleep though! And it's not the actual leaks that wake me up, it's when I close my mouth and STOP leaking! That's funny but the hissing sound stopping actually wakes me up.

You say we don't know the past settings, OA, CA, H and leaks and when they were happening, but I actually have charts of those from my DME clinic, but it's all in French.. it was before I used Oscar. But I can tell you the scenario was always like his : I'd have a good 3-4 hours without ANY leaks and almost no events, and then the second half of the night was pure chaos with leaks and events of all sorts, mainly as pressure increased. It was roughly the same with the full face mask as well albeit with less leaks.

Anyway, I'll try 8-12 with the EPR set at 3 for three nights and then post the results.. we'll see!

Oh and also... are there specific full face masks that you people have had nicer experiences with? I've tried the F20, F30i and now I have the regular F30 and all of those feel horrible to me.