Too much for one post?

6 weeks on APAP. My stats seem good and the treatment efficacious according to stats (AHI30 ish to AHI5 ish). However I feel worse than when I started. I actually didn't feel at all bad before and was very active and productive. Today, sleepy at times, tired and feel mentally slow and less productive. The damn masks seem to be the problem. Generally, when my facial muscles relax (rem sleep?) I find my cheeks flapping and or major leaks. This wakes me up. I got past the claustrophobia overall, but the fit of the masks keeps waking me for various reasons.

Have tried Airfit F20 in medium and small, the headgear seems too large, but that is all they have One size fits no-one? Then changed to Respironics Dream wear (now using small headgear and medium mask, moving to medium-wide mask in a few days (all full face). I Love it but if I "smile" even the slightest I get leaks at the corner of my mouth. The headgear seems to move around a little and LEAKS, even at the top of the head connection...I can sleep over half the night few small leaks, then MAJOR leaks. I found out through waking with parchment mouth that I am able to open my jaw past this mask in sleep. If I sleep on my left the mask leaks on right and visa versa.

It seems like the masks all have to be pretty tight for me which seems uncomfortable on the lower jaw especially, sometimes the nose. The ergonomics make no sense as the headgear all cup below the occipital lobe and when I rotate my head as if looking up they tighten on the lower jaw. Being a part time back sleeper this causes stress to the jaw as "looking up" is a natural position for back sleep for me.

We have known others (deceased now) that used APAP and never found a truly acceptable mask! HELP! With C-19 no one can just test a mask! Even if they did unless the cheeks and face are totally relaxed no one can assure against leakage, or can they ?

I should say that my provider delivered Resmed Airsense 10, I used OSCAR and titrated 9 to 14ish with -2 at exhale, moisture setting 4. I am using OSCAR to monitor the stats. I am also wondering it there is an issue with the interpolation of events between DreamWear and Airsense as the change to Dream wear dropped the AHI instantly! Hard to believe that is true ....but could it be more effective?

I am on an HMO plan referred to Integrated Home Services and they frankly seem clueless and definitely not a pro-active company. I doubt that ANYONE has reviewed my actual charts, certainly no one called me from there. They think they can just deliver and walk away until I complain. I think it is up to me to keep bugging them.

So, what help am I asking for? I am not sure....advice, suggestions? Do I go ahead and seek help (here?) looking at my charts before finding a good fit? At what point do I call my GP and discuss all this? Why isn't there some kind of standardization in service requirements? ARRGGHH.

Bentley'sDad wrote: ↑

Tue Jul 27, 2021 4:08 pm

AHI30 ish to AHI5 ish

What is that? You don't mean 30 to 5? Maybe 3 to 5? Assuming typo.

Bentley'sDad wrote: ↑

Tue Jul 27, 2021 4:08 pm

The damn masks seem to be the problem.

It's like dieting. Dieting wouldn't be so bad if you didn't have to eat less. CPAP wouldn't be so bad if you didn't have to wear a pressurized mask.

Go to youtube. Find a specific mask model that you have. Watch three or four videos on fitting and adjusting. Some of the videos are quite good.

Bentley'sDad wrote: ↑

Tue Jul 27, 2021 4:08 pm

keeps waking me

Yeah, that's why you feel bad.

Bentley'sDad wrote: ↑

Tue Jul 27, 2021 4:08 pm

Why isn't there some kind of standardization in service requirements?

Because it would be extremely expensive to have medical professionals to hold our hands. That's why this free forum exists!

Getting CPAP to work well is very much a DIY process and a forum support group can be a big help. There are lots of people here who have worked successfully through the same issues you are going through.

Welcome!

Bentley'sDad wrote: ↑

Tue Jul 27, 2021 4:08 pm

Have tried Airfit F20 in medium and small, the headgear seems too large, but that is all they have One size fits no-one?

ResMed does make a small headgear for the F20 mask. If you still have your F20 mask and would like to try a small headgear, send me a private message with your name and address and I will send you one. I purchased one several months ago just to see if I could use the small, but I couldn't make it work for me. I tried it on for about a total of five minutes and then laid it on the book shelf next to my desk.

No that is correct. The at home sleep study showed AHI 29.5 (two night test). Like I said, I never felt bad or had any known day symptom, but wife knew I would stop breathing and is scared her a lot. Now that I am on APAP I am around AHI around 3 avg. A lot depends. I have had nights of AHI <1 and nights of >6. But generally 3ish. Now I feel like crap, especially when the mask gives issues. I think it always wakes me at the worst times.
last night was an AHI of 3, but over a single 1 hour span there was AHI 13. The problem is that the nights I have the least AHI my pressures stay below 12. When my pressures get to 13.8 (my max) then mask leaks get high as well as the entire system disturbing my sleep. When I had the high setting above 13.8, just the pressure would wake me along with leak noises. I chose to lower the high end.
The real issue is the leaks are worse than ever on average, but I have leakless nights that have very low AHI and leave me feeling good.

Loosen the mask - yes, loosen it so it's not as tight, which can cause worse trouble than minor leaks (that can also be addressed by 'liners' - see Padacheek.com).

What is your min pressure setting = very well could be a problem.

Please post Oscar here and experts will interpret and advise.

Our sympathies; HMOs are considered by many to be
the epitome in health DON'T care.

Bentley'sDad wrote: ↑

Tue Jul 27, 2021 4:08 pm

The damn masks seem to be the problem. Generally, when my facial muscles relax (rem sleep?) I find my cheeks flapping and or major leaks. This wakes me up. I got past the claustrophobia overall, but the fit of the masks keeps waking me for various reasons.

Have tried Airfit F20 in medium and small, the headgear seems too large, but that is all they have One size fits no-one? Then changed to Respironics Dream wear (now using small headgear and medium mask, moving to medium-wide mask in a few days (all full face). I Love it but if I "smile" even the slightest I get leaks at the corner of my mouth. The headgear seems to move around a little and LEAKS, even at the top of the head connection...I can sleep over half the night few small leaks, then MAJOR leaks. I found out through waking with parchment mouth that I am able to open my jaw past this mask in sleep. If I sleep on my left the mask leaks on right and visa versa.

If the FFM isn't working out, why not try nasal or pillow type.
The DreamWear frame can be fitted with all three below.

And you can deal with mouth breathing by:

• taping

• pushing your tongue up against the roof of your mouth

• Scuncis

• firm foam cervical collar

Julie wrote: ↑

Tue Jul 27, 2021 7:38 pm

Please post Oscar here and experts will interpret and advise.

BTW the experts here prefer OSCAR screenshots in a specific format.

They also ask that questions specific to your therapy stay in one single thread - this one.
So that they don't hunt down other threads to know your history.
Or have to answer in multiple threads.

The easy way to set the OSCAR (v1.2) graphs in the preferred order and format:

1. Go to View menu - Reset Graphs - Standard

2. In View menu, turn on Sidebar

3. Again in View Menu turn off Daily Calendar and Pie Chart

4. Set Graph Height in File Menu -> Preferences -> Appearance Tab
The default should be 180.

On my setup, when set to 80, I get really squished up graphs.

At 192, the 5 graphs (flags, flow rate, pressure, leak, flow limit) are nicely spaced out.

At 160 I also get snores as the bottom graph.

5. Reset Graph Heights in View menu. This step may not be always necessary.

GrumpyHere wrote: ↑

Tue Jul 27, 2021 11:51 pm

If the FFM isn't working out, why not try nasal or pillow type.

damn you! stop being so helpful and concise!

OMG, IHS lives again (or still) and is now an HMO????

When I worked in healthcare IHS bought out a company I worked for (this was decades ago). They are all about the mighty dollar, couldn't care less about their patients (whom they referred to as "lives"). Supervisors had to have weekly "productivity meetings" and explain why they weren't constantly improving their "numbers" (billable hours) by significant percentage points. Meanwhile, they didn't understand their market in my area. I worked in a mostly rural area and was expected to cover several hundred square miles of territory and bill 7.5 hours of productive time in 8 hours when it often took me more than an hour to travel between patients or facilities (not to mention onerous documentation requirements that I often had to manage "off the clock" in order to satisfy their productivity goals). I was chastised for spending too much time with patients. I was told that after traveling 45 minutes on rural 1 lane roads washed out by winter flooding all I had to do was a "welfare check" on my patient and then bill Medicare. Medicare regulations required me to provide SKILLED CARE for reimbursement, and billing for a visit without providing skilled care is called "FRAUD". And IHS wanted to pay me by the patient instead of the hour so that I would earn half or less of what I was making for the same amount of work. This was suggested to "incentivize therapists to be more productive." Fortunately I quickly found another job, but this experience was one of the reasons I ultimately changed professions. I thought IHS died a well-deserved death a long time ago. Sorry to hear that's not the case. My deepest condolences that they are your HMO because that means they control your providers as well.

Sorry for the digression, but seeing the three letters "I" "H" and "S" together in that order is still a PTSD trigger for me.

For CPAP masks you are absolutely correct that our faces relax in our sleep and it changes the entire dynamic of the mask. FF masks are especially challenging, because there's a lot of surface area that must be in good contact with the mask cushion to keep the seal. Nasal pillows and nasal cushion masks are the easiest from the sealing standpoint, BUT, then you have to be able to seal the mouth.

One thing people often forget is there is a "mask fit" feature on most machines (It has a different name, depending on which brand of CPAP you have). The idea is that it will go to your highest pressure setting while you adjust the mask in your normal sleeping position. Then it returns to your usual pressure settings. If you can keep the mask from leaking at your high pressure setting, theoretically it should work both at the low initial pressure and when it goes higher during sleep (and sometimes this actually works!).

The other thing to understand if you have an air cushion mask is the tighter you mash it down on your face, the less efficient it becomes at avoiding leaks. The idea is to let the cushion fully inflate and seal against your face. When you have it too tight that cushion doesn't inflate to seal properly. So my suggestion is to try the following:

1. Loosen all the straps to your mask.
2. Lie down and turn on your machine using the mask fit feature or fixed at your highest set pressure.
3. Hold the mask gently to your face and tighten the straps just enough to stop leaking.
4. Wiggle your face around and adjust the straps with a very light touch if necessary.
5. Move into your normal sleeping position and adjust again, just enough to stop the leaking.

Hope you find something helpful and sorry for the IHS rant.

Janknitz wrote: ↑

Wed Jul 28, 2021 1:06 pm

seeing the three letters "I" "H" and "S" together in that order is still a PTSD trigger for me.

Sounds like they need to buy a consonant and rearrange.

ChicagoGranny wrote: ↑

Wed Jul 28, 2021 2:10 pm

Janknitz wrote: ↑

Wed Jul 28, 2021 1:06 pm

seeing the three letters "I" "H" and "S" together in that order is still a PTSD trigger for me.

Sounds like they need to buy a consonant and rearrange.

Janknitz wrote: ↑

Wed Jul 28, 2021 1:06 pm

1. Loosen all the straps to your mask.
2. Lie down and turn on your machine using the mask fit feature or fixed at your highest set pressure.
3. Hold the mask gently to your face and tighten the straps just enough to stop leaking.
4. Wiggle your face around and adjust the straps with a very light touch if necessary.
5. Move into your normal sleeping position and adjust again, just enough to stop the leaking.

Hope you find something helpful and sorry for the IHS rant.

With regard to the HMO issue: Yes I knew that there are HUGE issues with any HMO, however this one is top rated. It is the subcontractor that seems to the the Screw up. I remember when the norm for all insurance was similar to PPO and extremely CHEAP, now the PPO is the most expensive.

Last Night I tried a change: I created a way of keeping the jaw closed better and tried again. I felt much better but had the dreaded frown on my report. I had a feeling about tightening the straps more and have been plying. I had an intuition about the mask straps and over tightening, but I can't seem to find a good balance.

The good: I felt a lot better today. AHI 2.3
The bad: I don't believe the numbers because of the generally constant and high leak rate. I do not remember the leaks last night (except for a couple times near wakening) so that is also good. The higher pressures and incidents near wakening I think mean that the interruption is during my last REM.
The different: last night my mask pressure stayed at/near its lowest setting from 2330 to 0530 then rose to max and awakened me by 0715. I question accuracy because of leaks.
Tonight:
I will loosen the straps tonight and reset the system including the jaw strap, at max pressure and see what happens. I am hoping that the medium-wide full face mask resolves this (when it arrives), if it doesn't I will tray a jaw strap and nose mask and see what happens.

Your RANT is the cry of probably 85% of the population. There is NO excuse for the poor service and quality of care regardless. AS I said there is NOT ONE PERSON who has been involved that is qualified to even talk with me about this. They are generally high paid delivery personnel with benefits most of us never saw in our careers. One has been on APAP for years and didn't even know about OSCAR! that tells the ENTIRE story.

I will update as things change.

OK I guess I can post my first night with Dreamwear Full face medium-wide. It does not look all that different from many nights. The pressure graph is a little more "spikey" than average.
Airsense 10
Ramp off, Smart Start on. I also noticed that my headgear seems to leak at the hose attachment, probably a higher leak than the array of holes in the mask itself (on both pair of dreamwear). Is this normal for dreamwear (If so they need a redesign!) Any idea how to stop that leak?
BTW the leaking near daybreak wake me, you can also see when I woke to adjust the mask. I try and make it leak full on when I do that so I can see it in the chart.

Also, I noticed that I can not set the graph sizes in MacBook Pro. Any clues on how to do that? I manually adjusted them.

All DreamWear masks have 2 vent holes. One at the nose and one at the top of the head where the hose attaches to the frame. So it is by design and you shouldn't try to stop it or block it.
All masks have what are called intentional leak features...venting. This is needed to clear out the carbon dioxide we exhale so that we don't continually rebreathe carbon dioxide.

Bentley'sDad wrote: ↑

Fri Jul 30, 2021 7:01 am

I also noticed that my headgear seems to leak at the hose attachment, probably a higher leak than the array of holes in the mask itself (on both pair of dreamwear). Is this normal for dreamwear (If so they need a redesign!) Any idea how to stop that leak?