BamaGramma's Therapy Thread (Was Can someone explain all this and make suggestions?)

[Pugsy]

Okay....flex at 3...is it C Flex or A Flex?

BammaGramma....grandmother in Alabama by chance?
How tall and general weight??? Don't need to get real specific
Do you think that you are more of a shallow breather or a strong big breath kind of person?

[BamaGramma]

Okay....flex at 3...is it C Flex or A Flex?

It's C Flex.

BammaGramma....grandmother in Alabama by chance?

Yep, grandmother in Alabama. But WAR EAGLE!

How tall and general weight??? Don't need to get real specific.

I'm 5'3" and when I started CPAP therapy I was 159, but I've been on the Weight Watchers program for a little over a month and am down to 151. My goal is 140, which will drop my BMI to the healthy state and, according to the sleep doctor's nurse practitioner, qualify me for a second sleep study since there is a correlation between weight and apnea.

Do you think that you are more of a shallow breather or a strong big breath kind of person?

I'm a strong big breath kind of person. When the doctor listens to my lungs and repeatedly says "Big deep breath" I have to slow him down because I breathe deeply and fairly slowly. At night I apparently breathe through my mouth, or at least exhale through it, so I have a basic chin strap that works most of the time but every so often I get what I call a "breath burp."

I set the machine on 6 last night and it wasn't a good night. I had the mask on for about 4 3/4 hours (though there were a couple disconnects in there for bathroom visits) and I was awake at least the last 30 minutes of that time. I couldn't go back to sleep so I shut down the machine and got up. I see a nap in my afternoon. I've been napping a lot since I started with the CPAP and I rarely napped before.

I also have RLS and take Mirapex for that. The RLS is under control with a break-through maybe once a month. I was diagnosed with that around 2000 by way of a sleep study.

[Pugsy]

Let's try A Flex at 3 tonight. So change from C Flex to A Flex. See how it feels to you. You may or may not like it. I found it much more natural feeling than C Flex.

Minimum of 6 again.

The Mirapex can also cause daytime sleepiness. Of course short hours of sleep will also cause daytime sleepiness.

Do you have to go pee a lot during the day?

[BamaGramma]

Before the CPAP (hereinafter referred to as BC) I had no problems with Mirapex causing daytime sleepiness because I'd get 7-8 hours of sleep at night. Now I'm averaging 4-5 hours and am fatigued during the day.

Yes I pee a lot during the day but it's because I'm drinking a lot of water (1) because of the WW program and (2) because of this horrid heat. It was 110* with the heat index a couple days ago.

I'll set it to A Flex for tonight and report in tomorrow.

Thanks for all the advice.

[Pugsy]

I have lived in Alabama...I understand the horrid heat and the humidity. YUCK. I used to say "welcome to hell".

Was there anything special that seemed to cause you to not be able to sleep last night? Or just a bad night in general?

[BamaGramma]

Was there anything special that seemed to cause you to not be able to sleep last night?

Yeah. The CPAP. I know so many folks, my son included, who say they've never slept better than with a CPAP. I have yet to experience that. I want it to work. It has to work for the sake of my health, which is why it's so damned frustrating. I dread going to bed at night.

The best way I can describe it is that I feel like I can't breathe normally plus I have this contraption strapped to my head and can't sleep on my side very easily. And it's been this way since June 19 when I got the damned thing. I've changed masks once and can't change again without big cost to me for another couple months (six months from June 19 if I remember correctly what the DME said). <sigh>

And hell is right! Thank goodness for A/C.

[Pugsy]

Okay...now we have some specifics to work on.

Breathing doesn't feel natural...doesn't seem to match your own respiration. That's why I suggested A Flex...
Try all the settings and just choose the one that feels the best to you...no matter what the setting.

What other mask did you try besides the one showing in your profile? What did you not like about it?

Is your insurance Medicare by chance?

[BamaGramma]

What other mask did you try besides the one showing in your profile? What did you not like about it?

I had the Phillips DreamWear and at first the frame was too big. I got a smaller frame and the fit was better but I couldn't get it to stay in place. So I switched to the Wisp. I was still having some issues and the nurse practitioner gave me a mask liner with instructions to make a pattern from it and cut more out of an old soft t-shirt. That's helped a lot with both performance and feel of the mask. When I first picked up the machine, the tech (and I use that term loosely) asked what mask they'd put on me during my sleep study. She seemed surprised when I told her they hadn't put me on a CPAP. And that still begs the question of how did they know what settings to use for me?

Is your insurance Medicare by chance?

How'd you guess?

[Pugsy]

How'd you guess?

The mention of "can't get another mask for 6 months" thing.

Your DME is screwing you telling you that but that's a long story that accomplishes nothing to tell it.
Your insurance only pays for 1 complete mask package every 6 months.
Mask manufacturers will replace or give credit for any mask returned withing 30 days...Your insurance just paid for 1 mask...they get credit for the second mask...they could do more and get more credits but they are lazy.
The put it off on your insurance when in reality it's their own in house policy so they don't have to do more paperwork.
They won't change though but I hate lazy liars.

The DreamWear you tried....the gel pillow version or the under the nose cushion version?
Do you still have it? If you do did you get the little wraps with it?

I am asking all these nosy questions to get an idea what I might suggest ...and have in my donations box...that I could send you to try.
IMHO....the Wisp is a POS mask. Not surprised you are having trouble with it.

[BamaGramma]

The DreamWear you tried....the gel pillow version or the under the nose cushion version?
Do you still have it? If you do did you get the little wraps with it?

I tried the under the nose cushion version. And yes I still have it and it came with wraps for the sides.

[Pugsy]

Did you happen to use the wraps at all? When I tried the DreamWear nasal/pillow and even full face version..I found I had to add the wraps to even the small frame to get it to half way be stable. Still wasn't perfect but I could at least use it that way.

Let me see what I have in my bag of tricks that you could maybe try. Will be later today as I need to go get the donations box out of the shed and starting sorting through it. Will let you know later. Right now thunderstorms so not really wanting to go outside yet.

What size DreamWear nasal cushion were you most successful with?

[BamaGramma]

Yes, I used the wraps with a small frame and small mask (they gave me a medium frame initially and it was all over the place) and still had trouble keeping it in place. The thing I like about the Wisp is the magnetic snaps that keep it more stable. I did like the top-of-the-head hose attachment on the Wisp as opposed to frontal attachment on the Wear. I remember having a heck of a time getting the connector unconnected from the hose to change over to the Wear, and that involved needle-nose pliers.

But I'm open to trying anything.

[Pugsy]

So what do we need to do with the Wisp to make it more comfortable for you? So that it won't bug you and will disappear and not cause you to not be able to sleep??

I am wondering since you like the top mounted hose thing if you might like the ResMed version????
Have you looked at those?

https://www.cpap.com/productpage/resmed ... -cpap-mask

https://www.cpap.com/productpage/resmed ... illow-mask

I am sorry but I haven't yet tried either of these to compare the small frame fit with them to the Respironics DreamWear small frame fit.
And no one has donated either of them either for me to try out.

[BamaGramma]

My understanding was those nasal masks don't work well for side sleepers. And side is my preferred position. That's why they put me on the DreamWear. I worked and worked with the Wisp, adjusting the straps every which way and I simply could not get it to stay in place even sleeping on my back. If I moved the slightest it would shift out of place. I'm not sure the ResMed version would work any better. It seems I have a small head (it's almost impossible to find a hat that doesn't come down to my eyes and cover my ears) and that may well be the problem with that frame.

Plus, you know Medicare. Oh no, it's not them, it's the DME. Nothing new until December. <snark>

[Pugsy]

What's this about nasal masks not working for side sleepers? Did the DME (who is a known liar) tell you that crap?
Bunch of horse manure.
I am on my side 90% of the time and I can use any nasal mask I want to use....pillows or over the nose cushion or under the nose cushion.

It does sound like you are like me in that the small DreamWear frame was still a tad too big even with the wraps.
What I ended up doing was adding more wraps up on top to help snug it up a bit. I had some old wraps from another mask that I could wrap around the top part of the frame.

Which one of the 2 masks that you have now do you hate the least?