Finally got switched to auto - new data

That period starting at 3:15.....leaks were acceptable but the pressure was pegged out at max.
You need more pressure .... I don't know if even turning EPR totally off will be enough..
Did you get my PM about the nasal pillow mask I could send you? Not what I would really like to see you try but it's all I have....but it's free.

Edit: Unless I totally missed the boat here...my magic eight ball says you are going to need a bilevel machine both for pressure needs and comfort at the pressures you need.

FreeIndeed wrote:

Nick Danger wrote:Are you using a mask liner?

I tried REsmed's little gel nose thingy, but it leaked at the point where the gel strip ends and your cheeks begin. I tried it with 2 sizes of F10 masks and moved it around countless times.

I have not tried a whole mask liner though.

I got sick and tired of my mouth breathing and tried the AirFit F10, but the leaks were so bad I gave up on it and went back to my Wisp and chinstrap combo. But I never heard of this "REsmed's little gel nose thingy" - what is that and where did you get it? Maybe whatever it is would make the F10 work for me.

Thanks, Nate

Back to the DME today! I got a Mirage Liberty hybrid mask to try tonight. It's kind of weird looking, like a combo of a full face and nose pillows, but it doesn't go over my nose, so I'm hoping for the best! The funny part about my visit is that the head tech at the DME came up to me (I've met her before) and said "You're the one downloading and looking at your data right? YOu need to stop doing that. You shouldn't be doing that." I kind of chuckled and asked her if she was joking or serious because she was kind of smiling, and she said she was serious. "There's no reason you need to be getting into your data... why do you think you need to see it?" I said "Because I care a lot more about my therapy than you do!" She mumbled some stuff about me not being able to interpret the data correctly and I told her, "hey, I haven't made any changes on my own; Ive gone through you guys for all of them, but I am going to be studying my data."

I left out how the forum members here know about 100 times more about "interpreting the data" and coming to the right solutions. So far I've "led" them every step of the way by making subtle suggestions and asking leading questions - all from the feedback I've received on the forum. Anyway, I was way more upset afterwards, but I was taken back by the comment at the time and was fairly cool. Anyway; one more story to add to the DME stack.

FreeIndeed wrote:Back to the DME today! I got a Mirage Liberty hybrid mask to try tonight. It's kind of weird looking, like a combo of a full face and nose pillows, but it doesn't go over my nose, so I'm hoping for the best! The funny part about my visit is that the head tech at the DME came up to me (I've met her before) and said "You're the one downloading and looking at your data right? YOu need to stop doing that. You shouldn't be doing that." I kind of chuckled and asked her if she was joking or serious because she was kind of smiling, and she said she was serious. "There's no reason you need to be getting into your data... why do you think you need to see it?" I said "Because I care a lot more about my therapy than you do!" She mumbled some stuff about me not being able to interpret the data correctly and I told her, "hey, I haven't made any changes on my own; Ive gone through you guys for all of them, but I am going to be studying my data."

I left out how the forum members here know about 100 times more about "interpreting the data" and coming to the right solutions. So far I've "led" them every step of the way by making subtle suggestions and asking leading questions - all from the feedback I've received on the forum. Anyway, I was way more upset afterwards, but I was taken back by the comment at the time and was fairly cool. Anyway; one more story to add to the DME stack.

If they bring that up again, ask them if they would recommend that people with Diabetes NEVER check their blood sugar levels with a meter........especially if they're on insulin.......or, adjust their own insulin dosages.
I'll bet that'll shut 'em up.


Den

.

FreeIndeed wrote: "You're the one downloading and looking at your data right? YOu need to stop doing that. You shouldn't be doing that." I kind of chuckled and asked her if she was joking or serious because she was kind of smiling, and she said she was serious. "There's no reason you need to be getting into your data... why do you think you need to see it?" I said "Because I care a lot more about my therapy than you do!" She mumbled some stuff about me not being able to interpret the data correctly and I told her, "hey, I haven't made any changes on my own; Ive gone through you guys for all of them, but I am going to be studying my data."

or, you could point out to them that if you hadn't been interepreting your own data, given how poorly they've supported you, you'd never have known how utterly ineffective the treatment was with the masks they've given you, since (iirc) THEY didn't tell you it wasn't working at all...

Well, last night I put the mask on and it immediately sealed. NO fuss, no muss. It may not be as comfortable as the F10, but it does it's job. Here's last night's data, which finally shows that I didn't have a crazy leak rate. I see the pressure was maxed out and I still have a huge AHI, so I bet you're right on the Bi-lev. This is the first time it's reported any Hypopneas. Also, I don't know what's going on at 5:30. THe data cuts out, but the mask wasn't leaking. Wierd. What do you all think?

I would like to think that time where nothing shows up in the events graph was good therapy...the flow rate does't stop and the leak rate doesn't stop...but given how bad your therapy looks all other times it does make us wonder doesn't it.? Wonder what changed to make things look so good???

How about trying 20 with EPR of 2?

When you get the nasal pillow masks...maybe this pressure will work a little better. Often people can get by with a little less pressure with a nasal pillow mask than they need with a full face mask. It makes no sense but I have seen it verified too many times to say it won't happen. In your situation you obviously need more pressure but your machine won't give you much more.

I predict a bilevel machine in your future.

I say an epr of 0, he needs all the help he can get keeping his airway open

FreeIndeed wrote: Also, I don't know what's going on at 5:30. THe data cuts out, but the mask wasn't leaking. Wierd. What do you all think?

the data doesn't cut out, you see there's a normal looking flow graph and pressure starts to drop becuase you're not having events.

it looks like you turned over on your side or something

palerider wrote:I say an epr of 0, he needs all the help he can get keeping his airway open

yeah...I know but geez 20 without EPR is a big leap from what he was using...maybe ease into it with EPR at 2...then 1 and then maybe 0.

I also wondered about sleep position. That's the only thing I can think of that might cause such a remarkable change.
But I thought we already discussed sleep position...I can't see the really old posts right now to refresh my memory.

But...if he is sleeping on his back primarily... then side sleeping would be the first thing I would try if possible.
Sometimes pressure needs are remarkably reduce when side sleeping vs supine sleeping.

Pugsy wrote:

palerider wrote:I say an epr of 0, he needs all the help he can get keeping his airway open

yeah...I know but geez 20 without EPR is a big leap from what he was using...maybe ease into it with EPR at 2...then 1 and then maybe 0.

well, the problem I see is that he's got an epap of 16 right now, and that ain't workin!

going to an auto of 20, might not need it, heck, it's possible that 17 or 18 might be enough, we just don't know.

but what he's got now, .... no good.

palerider wrote:but what he's got now, .... no good.

I know. I was just trying to weasel in the straight 20 with no EPR by easing into it gradually. Personally..I have my doubts that it is enough unless we can figure out why the one hour really good results showed up last night.

He should get the nasal pillow mask I sent him tomorrow. Maybe we can get some good luck there because all he has had so far has been bad luck. At this point..try anything and everything.

palerider wrote: it looks like you turned over on your side or something

I think maybe that could be it. I started sleeping on my back and do remember moving to the side at some point later on. Tonight I'll try the EPR at 2/ max 20 and lie on my side. That's the plan!

You know if it does end up that side sleeping makes a HUGE difference in pressure needs...maybe we need to get out the handcuffs and fix it so you can't roll onto your back.
You wouldn't be the first to have marked differences in pressure needs depending on sleeping position. Sometimes such a big difference it does warrant extra effort to stay on the side.
It's hard though to retrain the body not to go on its back when it is used to it....but it can be done.
It's also a bit more difficult to side sleep with a full face mask...that's when different bed pillows can help.

By any chance, do you have GERD? (that you know of or may suspect)


Den

.