New user woes

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
bennyhur
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New user woes

Post by bennyhur » Fri Jul 25, 2014 5:41 pm

Hello all I saw there is some great information on here.

I just wanted to discuss my experience so far with cpap and some of the frustrations I am having. I started therapy 2.5 weeks ago on july 9th.

First of all my pressures are really high - I feel like they are and my RT tells me that. I am on bipap therapy with epap 20 cm h2o and ipap 24 cm h2o pressures.

These high pressures are causing all sorts of issues that are hard to get rid of. Most of all LEAKS! I have gone so far as to modify my facial hair and to clean my face with alcohol pads every night to try to get a good seal - which for the most part I am getting (but I have to tighten my headgear quite a bit) but as the night progresses oil will coat my mask seal and the high 24 cm h2o pressure will start blowing out of the seal and once that starts it's near impossible to stop without turning off my machine and then cleaning the seal which is just too much to do every couple hours per night. In addition to this my mouth gets super dry because I am a mouth breather (full face mask) so that wakes me up sometimes and when I close my mouth the mask starts leaking all over the place on the bottom seal until I open my mouth and let the air puff out my cheeks again which re-establishes the seal.

I saw on here some people suggested mask liners which I ordered and got today so I'll be trying those tonight and hopefully can have my mask looser (the other day I had it tight enough so that I got a whole night without huge leaks [sleepyhead reported extended duration leaks of up to 80 liters per minute] but it was so tight it started digging into the back of my skull and left an indentation so last night I had to loosen it up again which meant more leaks).

The other thing I am experiencing is something a lot of comments on here have reported: swallowing the air and having to burp and fart all night and day long which is really annoying, not to mention the abdominal discomfort of having a bunch of air inside you. Talked to my RT about this and I'm going to be sending my machine's sd card to her so she can modify my pressures (hopefully), but I have my doubts about how much they could lower the pressure to maintain successful therapy. She's also gonna send me a different mask (Currently have mirage quattro, she's gonna send me the one they used in the sleep study which I think worked a bit better - the airfit f10. Any experiences with this mask for an active sleeper? I like to sleep on my side and I alternate sides throughout the night.


Lastly, I am reviewing my data in sleepyhead and as I already mentioned I am getting huge leaks for a majority of the night (until the leaks wake me up, or I wake up because of an overly dry mouth); but sleepyhead and the machine are reporting an AHI of 0.0 almost every day which I find hard to believe because 1) I don't think the machine can accurately determine an apnea event with 80 l/min leaks and 2) I wake up feeling worse than I ever did before starting therapy, though that is also probably because since starting therapy 2.5 weeks ago (jul 9) i have been not sleeping much because of all the leaks and just adjusting to gale force winds being shoved down my mouth; plus I've been going to bed too late in the evening.

So because I am not trusting the AHI figures (in the study they said I had over 130 [over one hundred forty, in fact] - so very severe OSA) I got a pulse oximeter in order to correlate the blood oxygen levels overnight with the machine readings to make sure in sleepyhead.




So I just wanted to share my current experiences. Hopefully someone can suggest some tips other than mask liners and talking with the RT about pressures for the air swallowing.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: S9 VPAP ST; bipap 16/20 cm h2o; using sleepyhead and spo2 assistant (cms50f)

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Nick Danger
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Re: New user woes

Post by Nick Danger » Fri Jul 25, 2014 5:49 pm

Alas, I have no advice for you, but I am sure others do. I just wanted to acknowledge your effort in trying to make this work. The kinds of problems you are mentioning are not unusual and you are doing many of the right things to try to solve them. I'm sorry that you need such high pressures - that must be difficult to deal with. The feeling like crap in the morning is almost certainly due to the frequent waking due to leaks.

Good luck and keep trying.

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Pugsy
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Re: New user woes

Post by Pugsy » Fri Jul 25, 2014 5:57 pm

Welcome to the forum.

Leaks of 40 L/min with the ResMed S9 are large enough that the machine can lose the ability to sense and record events. If you are spending much time at 80 L/min the machine is clueless so we can't trust that AHI of 0.0 at all.
Large leak territory with the S9 begins at 24 L/min. The machine can still sense events up to around 30 L/min and above that things start getting iffy.

Gotta get the leaks under some semblance of control both for accuracy in reporting and simply so you can sleep better without the leaks disturbing your sleep.

Can you normally breathe through your nose just fine during the day and night? Or do you have chronic nasal congestion issues that force you to breathe through your mouth and thus requiring a full face mask?
Or are you using a full face mask because someone told you that's what you had to use with your pressures?

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bennyhur
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Re: New user woes

Post by bennyhur » Fri Jul 25, 2014 6:05 pm

Breathing through my nose at night and day vary - at night especially my nose gets stuffed up and I have to breath through my mouth - though with the mask on I have not experienced that - only when I take the mask off and try to sleep without it do I start getting a stuffy nose which is fairly common for me.

The reason I am using a FFM is because the tech at the sleep study came in and changed my nasal mask out for it - it flet too weird for me and I had to keep inhaling manually through my mouth for me to feel right. Though I've only used the nasal mask for a total of like 20 minutes and then full face since then - I know I would open my mouth right up and break the seal with only pillows or a nasal mask once I actually fell asleep, especially with a pressure as high as mine.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: S9 VPAP ST; bipap 16/20 cm h2o; using sleepyhead and spo2 assistant (cms50f)

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Julie
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Re: New user woes

Post by Julie » Fri Jul 25, 2014 6:27 pm

See if your nose gets better with less humidity if you use it (or more if you're in a dry area), because it does congest some of us and I hardly ever use it.

library lady
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Re: New user woes

Post by library lady » Fri Jul 25, 2014 6:31 pm

I am active sleeper, too. My first thought as I read your post was mask liners, but then I noted that you are going to try one tonight. You might want to avoid cleaning your face with alcohol and using soap and water instead, then throroughly drying your face - alcohol is not good for the cushions, they can degrade. I have the AirFit F10 mask, and I really like it. I struggled with dry mouth in the beginning, and I found my solution in a large double-walled mug with a cover and a straw. I fill this half full of water and set it on a little Rubbermaid-type stool about 3 feet from my bed - not on the nightstand in case I spill and get water on the machine. When I wake up needing a drink, I turn off the machine and pull the connector off the mask to sip some water. For me, this works perfectly because the mask connector is directly opposite my mouth so it's easy to get to the straw without taking the mask off. For people whose mouths are not in line with the connector, using a flexible straw should work. Double-walled to keep the outside dry, and a lid and handle on it to help keeping from dropping and spilling in the dark in the wee hours of the night. I did spill one night when I missed the edge of the little stool, but it wasn't a bad spill, could have been a big spill if there hadn't been a lid on it - my pajamas got a little wet, but hey, it's only water, so I just went back to bed.

Interestingly, after several months of needing water for my cottonmouth, I find myself forgetting to put the water out... I believe I've gotten so used to masking up that I either don't notice it, or I just don't have a dry mouth anymore. I suspect that I've simply gotten used to it, but who knows?

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bennyhur
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Re: New user woes

Post by bennyhur » Fri Jul 25, 2014 10:59 pm

Thanks for the suggestion of the covered cup with the straw, I will try that!

I just hope I can get these leaks under control in addition to the swallowing of the air.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: S9 VPAP ST; bipap 16/20 cm h2o; using sleepyhead and spo2 assistant (cms50f)

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kteague
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Re: New user woes

Post by kteague » Sat Jul 26, 2014 7:30 am

Yes, higher pressures do seem to compound the potential problems even those of us with lesser pressure face. I'll leave the coping with high pressure advice to those who know what they're talking about. Just throwing out a suggestion that you look at the details of your sleep study report and see if there is positional component to your apnea events. If the events were more and/or more severe when on your back, just maybe taking steps to be sure back sleeping cannot happen might enable you to use a lower pressure.

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bennyhur
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Re: New user woes

Post by bennyhur » Sat Jul 26, 2014 10:46 am

So I tried out the mask liners last night - they certainly made it so it wasnt so loud when it leaked but I still had pretty severe leaks. I dont want to tighten the straps anymore because when I did that before as I said it dug into the back of my head and left an indentation that hurt for the entire day.

Since it was leaking last night I decided to try sleeping without the mask to try to get some real sleep. I had the oximeter sensor recording data all along and I am shocked. Even with the poor quality seal the bipap is really helping me stay alive. Here is a screenshot of the oximetry data and sleepyhead to correlate when I took the mask off then put it back on. My SpO2 dropped to as low as 74 without the mask on. So I really know I need to stick with it, even if it is leaking all over the place. Hopefully I will have more success with leaks with the new mask. The unfortunate thing is I cant do another mask swap for 3 months (I could do one within 30 days of starting) because of insurance.

Image
Image

edit: here are some stats of the spo2 data:
Image

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: S9 VPAP ST; bipap 16/20 cm h2o; using sleepyhead and spo2 assistant (cms50f)

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palerider
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Re: New user woes

Post by palerider » Sat Jul 26, 2014 12:41 pm

bennyhur wrote: Since it was leaking last night I decided to try sleeping without the mask to try to get some real sleep. I had the oximeter sensor recording data all along and I am shocked.
hopefully this has disspelled your notion that you get 'real sleep' without the mask.

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HoseCrusher
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Re: New user woes

Post by HoseCrusher » Sat Jul 26, 2014 12:54 pm

That is one of the best with and without comparisons I have seen...

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palerider
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Re: New user woes

Post by palerider » Sat Jul 26, 2014 1:45 pm

I suggest playing with the mask while laying down, don't strap it on, just turn on the machine, (or use the mask fit feature unders setup) and try to get it to seal, with the mirage quattro that you have, if it's too tight, it actually makes it worse. put it on your face, and clip the hose on, and kind of wiggle around, see if you can't find soemthing that works.

check on youtube for mask fitting videos too.

I've got the quattro and run pretty high pressures at times, and have managed to get it so that it's not leaking terribly, and hardly at all part of the time.

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Sleeper Agent
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Re: New user woes

Post by Sleeper Agent » Sat Jul 26, 2014 5:21 pm

bennyhur wrote: I just hope I can get these leaks under control in addition to the swallowing of the air.
I have problems with air swallowing too. Check out my threads and see if they help, or if you have any advice.

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