Pokey49 - Therapy Thread

[ejbpesca]

Am I correct in that there are 4 basic styles:

Full face “fighter pilot” mask”
Full face hybrid with nasal cradle & lower mask over the mouth
Nasal cradle masks. 
Nasal pillow masks

There is one more.  It is the true full-face mask I do not think many use.  It actually covers your whole face.  One person I know used one.  He had to place paper face tissues around it to keep the leaking air from bothering him.  Another who uses it says with each exhale it rises off their face.

I just got my first 3 nights in a row with less than 1.00 AHI.  Took 18 years to get here.  My F40 leaked more than what is commonly acceptable because it is 21 days old and I loosened the strap due to them being too uncomfortable.  I had tightened them on day 16 and got the mask to seal.  Leaks a are problem but not a therapy killer by my experience.  I could not stand air to the eyes but I have gotten used to leaks coming out the side of the F40.  They happen during sleep and can wake me but I fall back asleep.  Such has been the case for 18 years. 

I used a nasal mask for about two hours and that was during a sleep study.  On went the fighter pilot type and that was it for 16 years.  I saw the Evora FF online and bought it.  I was happy to be out from under the F20 fighter pilot mask.  I saw the F40, got it from my DME with insurance coverage.  It has been the best thing to happen to me since I began therapy.  I'm never going back to fighter pilot masks if possible.

Yes.  It takes much time, patience, and tedious work to get used to PAP therapy.  It was not until year 14 that I finally began to learn how to adjust my machine through this forum.  I may be JUST NOW getting decent therapy.

[Pokey49]

EJ. Sounds like you’ve had quite the journey. I’m 75 and just starting. I had 4 in lab studies and 2 home studies before arriving here. In lab studies in 2011 & 2017 showed no apnea or not enough to qualify for Cpap. For both of those studies I was given meds so I could sleep. At an in lab study in 2016 they refused me a sleeping medication and after laying awake until 430 am I got up and went home. In July of 2024 I had another in lab study that was a bust. I requested an at home study but the sleep doctor refused saying they didn’t give her enough data. I rather think she refused because she wouldn’t get any $$ out of it. Sooo!! I ordered my own from one of the more reputable online outfits and lo and behold it showed I had low moderate apnea and here I am fighting cpap masks. 

My biggest challenge is I’m a very fussy sleeper. The slightest noise or aggravation will keep me awake or wake me up. I sleep with a white noise machine at home or when I travel. If I’m in a motel I always ask for the top floor, not facing a busy street and not close to elevators, vending machines or stairs. So a Cpap mask is a proverbial pain in the ass for me. BUT I had 20!successful nights in a row to start and felt its benefits. So I’ll keep trying. It just might take me a bit longer to accept a mask on my face blowing air up my nose. 

I do appreciate all the kind words and help offered here 
Pokey

[ejbpesca]

Pokey, 

I too run a noise machine, two box fans with 20x20 filters taped to them.  It helps me with my tinnitus and obviously, as the filters turn dark, pulls junk from the air in this old house.  My mask leaks have been waking me for 18 years but if I can get a <1 AHI night I am okay.  The claim that 5 AHI is sufficient is not correct for my severe apnea. 

If it were not for this forum I never would have realized my machine was not set correctly.  5 DMEs set them 8-20. Maybe once a month I would get decent therapy.  The pulmonologists who write the prescriptions to keep me in machines and gear have never once looked at anything concerning how well my therapy is going...not even to see if AHI is 5 or under.  They only want to know if I still use the machine 4 or more hours per day.

Best of luck to you.  If I can keep this below 1 AHI going I am a happy boy. Hah. (old codger)

[Pokey49]

Well another not so great night. I'm very frustrated. I started this journey February 17th. The first few days I just used the cpap while watching tv or reading to get use to it. Then started in earnest and had 21 straight days of positive results with 7-8hours of therapy and was physically feeling the positive results. But that seems have gone to hell in a hand basket. Ive tried 3 different masks: N30i at first then F30i and now a F40. With the F30i and F40 I start out fine, roll over and go to sleep but then wake up at 1-2-or3 with them leaking, blowing air in my face or eyes. I fuss with the straps, check to make sure air is blowing into the mask, but no matter how I adjust the straps they persist in leaking and I feel like Im not getting enough air. In fact I feel like I am suffocating at times.  I end up tearing the mask off in frustration and needing to breath normally. I'm wondering if something has changed how my body is now responding to cpap after 23 positive days. At first I responded well, now its a constant struggle.  

Question: why does is it that when I start for the night I feel like plenty of air is flowing into my nose when I take a breath but then later I can hardly feel any air flowing into my nose at all. The machine says its blowing 8, but it sure doesnt feel like it?? 

Ive attached last nights OSCAR report. You will see a gap in data, that's because I took the mask off about 2a.m. and tried again later.  Also, starting Monday my DME is fitting me for an P10. My hope is that will eliminate the leak issue. 

Also my RT suggested maybe I should be on a Bi-Level or set my  A11 to a straight 9cm of pressure. Not sure what that means or why she would suggest that as a possible option??? But then in thin king about it it seems my A11 is acting like a biLevel with minimum pressure set to 8 and EPR at 2 which would then be 6cm, 2 pressure levels??

Pokey

[jdougc]

2 things, your flow limits are high, so your are not getting enough air.
ResMed's EPR does not start the inhalation as soon as a bilevel, there is a noticeable delay, which could cause you to be " starved for air" after an arousal, imo. Lessen EPR and raise your minimum pressure, or use CPAP mode, as suggested

[Pokey49]

thanks for the response. I have a couple questions as I dont know what all these terms mean. I'm a former medical professional and like to know what all these things mean so I understand what's going on

-What does flow limits being high mean? I dont know what a flow limit actually is?

-My A11 is now set at 8-20 with EPR at 2. That was working pretty well for a while. Why would it not be working well now?

-Based on your advice are you saying to raise my pressure setting to 9-20 and EPR of 1 since its currently set at 2?

-Or the other option - set at a straight cpap of 9? with no EPR?? 

- will any of these changes remedy leaks??

thanks

[jdougc]

One of you goals should be to have more breathing rates like between 23:20 and 0:20, unless you are in deep or rem sleep, imo.
As far as flow limits see the wiki,,, https://www.apneaboard.com/wiki/index.ph...limitation

Our bodies are always changing, more/less tired or other issues, and our bodies are adapting to the changes in cpap. Or we are sleeping slightly differently. Or the mask fits differently.

[ejbpesca]

Well another not so great night. I'm very frustrated. I started this journey February 17th. The first few days I just used the cpap while watching tv or reading to get use to it. Then started in earnest and had 21 straight days of positive results with 7-8hours of therapy and was physically feeling the positive results. But that seems have gone to hell in a hand basket. Ive tried 3 different masks: N30i at first then F30i and now a F40. With the F30i and F40 I start out fine, 1. roll over and go to sleep but then wake up at 1-2-or3 with them leaking, blowing air in my face or eyes. I fuss with the straps, check to make sure air is blowing into the mask, but no matter how  2.I adjust the straps they persist in leaking and I feel like Im not getting enough air. In fact I feel like I am suffocating at times. 3. I end up tearing the mask off in frustration and needing to breath normally. I'm wondering if something has changed how my body is now responding to cpap after 23 positive days. At first I responded well, now its a constant struggle.  

4. Question: why does is it that when I start for the night I feel like plenty of air is flowing into my nose when I take a breath but then later I can hardly feel any air flowing into my nose at all. The machine says its blowing 8, but it sure doesnt feel like it?? 

Ive attached last nights OSCAR report. You will see a gap in data, that's because I took the mask off about 2a.m. and tried again later.  Also, starting Monday my DME is fitting me for an P10. 5. My hope is that will eliminate the leak issue. 

Also my RT suggested maybe I should be on a Bi-Level or set my  A11 to a straight 9cm of pressure. 6. Not sure what that means or why she would suggest that as a possible option??? But then in thin king about it it seems my A11 is acting like a biLevel with minimum pressure set to 8 and EPR at 2 which would then be 6cm, 2 pressure levels??

Pokey

You are not far into getting used to PAP therapy.  More time and patience is needed.

1. Rolling over may be dislodging your mask from its seal but your OSCAR shows no leak problem.  Maybe you move the mask and correct the leak quickly.  Rolling/moving and getting a leak is a fact of therapy for me.

2. Get those straps too tight and it will cause a leak.  Your OSCAR shows you do not have a leak problem.  Is the exhaust of the mask irritating you?  If so, that will take moving to a position that may not allow the exhaust to irritate or hope to become tolerant of it.

3. Tearing the mask off as early as you are into PAP is not uncommon.  I did it for a few months while asleep then found the mask off when I woke.

4. I too at first feel the flow of air each use but after a time with a mask on I do not.  I think this phenomenon is caused by getting accustomed to the pressure each use and the body/mind feeling the PAP is normal.  I have to check to see if the machine is on sometimes I feel so little sensation from therapy.

Tip: Lift the mask of your face a bit, feel it blowing 8 now?  Put it back down.  Feel it then?  Not feeling it is a GOOD thing for many.  Feeling it irritates them.

I use no EPR.  At first, I feel resistance to exhales but in a few minutes I adapt and that sensation stops.

5.  Make sure the straps are in their best position not just properly taught.  If they are not adjusted into the right position air may escape.

6. A BiLevel PAP will extend the range of what EPR does and be more efficient at moving from the lower exhale pressure back to the inhale therapy pressure.  EPR on an AS11 does not work for everyone...like me.  It does not recover from its pressure reduction on exhale fast enough to maintain my min. pressure inhale level.  

A BiLevel is maybe what I need and I will ask for one.  It can be adjusted to offer greater amounts of reduced pressure on exhales than EPR 3 and do it with a more efficient return to the therapy pressure.  AS11 with EPR is not the same as a BiLevel machine but yes the pressure on both can be adjusted to be less on exhale.

Straight 9cm pressure is CPAP mode, not APAP.  It stays at 9cm (no min. max range) therefore your AS11 is not adjusting the pressure up and down.  You have the choice of CPAP mode on your AS11.

I would try at least increasing the min. to reduce apneas. 8 cm is a common first setting.  Time to try adjusting.  I have had success by increasing min and decreasing max.  By reducing max the mask is less likely to leak on spikes to higher pressure which may not even happen once min pressure is raised.  You can increase your min. a bit at a time to ease into higher pressure.

For 15 years my pressures were set by the DMEs at 8-20 which were WRONG. 8-20 is a standard setting by them thinking the machine gives proper therapy automatically.  It does not.  A BiLevel could be much better due to more precision software.

Hope you get used to the masks...it can take a LOT of time.  I don't see much Large Leaks on your OSCAR.  What's up with that?  You feel it leaking like crazy yet OSCAR reports few leaks.

[Pokey49]

here's a modified view of last nights OSCAR. I looked up flow rate limitations. I kind of get it. But Im not sure what to do about it, seems there are many variables with this cpap stuff and they change based on, well, other variables

[Pokey49]

EJ: my minimum pressure is currently at 8-20 with EPR at 2. My RT did suggest the other day to raise to 9, so will try that tonight. I have more faith in advice here than from my DME RT.  When I upped the pressure from 7-20 to 8-20 that helped a lot, but is not working now it doesnt seem. 

To be clear what is the one or two things you recommend I try tonight. There are so many variables I don't want to make to many changes at once. 

As for leaks I dont know why my graphs arent showing them. I sure detect them!! Maybe they technically are small but when I wake up with air blowing in my face I thinking thats whats waking me up

Thursday night I didnt try CPAP at all as I was exhausted from the night before and needed a full nights sleep. Slept like a baby for 8 hours and felt great the next day. I hope I have the patience to see this through.