Grrr...no sleep :(

[Pugsy]

Try EPR turned off. I found it annoying.

Actually I thought about suggesting that but prefer to do one change at a time so that we can judge the results better.
At the pressure she has been using...EPR wasn't doing much anyway but given her history I suspect that she might do better with EPR working like it is supposed to.

[SnoringinDXB]

Wow pandatx I really feel for you. I am not quite a week into xPAP, and I am lucky I have taken to it pretty well - worst night with the mask was 6.5 hours, and only one bad night with the Mirage Softgel which was just a horrible mask for me. My AHIs have all been less than 1, minimal leakage, etc. I am just trying to identify the best mask for me, but other than that it has been fine.

I really hope things pick up for you. I am sure they will with the great advice and support on the forum here. Stick at it!!!

[khauser]

In addition to what you got already, keep in mind that you should NOT have to open your mouth to "avoid suffocation" so don't look for solutions that prevent you from having that "last resort".

Now, are you opening your mouth consciously? Or is it opening and causing you to wake up due to the leak? If the former, you don't have to give up on nasal interfaces (pillows or otherwise). If the latter, you might be in a bad situation, so it'll depend on lot on your determination to avoid a full face mask. For instance, people have been known to tape their mouths shut ... something I am pretty sure would drive me to a full face mask, but that's me.

Personally I do think nasal pillows are the most comfortable way to go, and I am hopeful that pugsy's advice to increase the pressure a little will help you. Have you tried wearing the mask with the machine on while watching TV? Do you feel problems breathing then? If so, you could play with the pressure in small increments to see if you can find a comfortable place, and if it's close just use it. If not I would suggest checking with a doctor first as I think there are some medical conditions that contra-indicate really high pressures. (Maybe other people on the forum will know better)

Does the full face mask really make you claustrophobic or is that also inability to breathe??

Also, know that your experience with ANY mask at a sleep center isn't a good indication of its behavior when just purchased by you. The seals rapidly stiffen due to the protocol for cleaning between patients, so they have to be tightened quite a bit more than normal.

[NotLazyJustTired]

Well Amy, I don't have much to add from the good help you are getting. It seems that you may be very sensitive to this sort of treatment. We all are to a certain extent, I suppose, but based on your progress I am thinking you will need to give this some time, a lot of time. Take it one step at a time. It will come in time. My first week I was pretty miserable too. Some of what you are describing is not too far off from what I experienced as well. The best encouragement I can offer you, is that in small, subtle ways, you will begin to adjust. I am in my third week and I don't think I am quite through the adjustment phase, but it is getting easier to sleep. My energy is starting to return as well. It will get better. There have been a few mornings I woke up and didn't even realized I had a mask on for a moment or two. Can you believe that?

BTW, your signature says you are using the Bella FX. If that is so, may I ask if you have tried the full (strapped) FX headgear? It has made a world of difference for me.

[Pugsy]

BTW, your signature says you are using the Bella FX. If that is so, may I ask if you have tried the full (strapped) FX headgear? It has made a world of difference for me.

She actually has both since the traditional headgear comes with the Bella Loop package.
She's using the traditional headgear right now. We talked about giving the loops a try but I think until the suffocation thing is out of the picture and she is just simply more used to this therapy in general I don't know that the Loops would be a good idea....but some newbies start out with the Loops and never look back.

The Swift FX Bella Loops package with all the equipment comes with the traditional headgear included.

[YogaKitty]

Do you have the funds to try another mask in addition to what you get from the DME?

I started off with the Swift FX Bella, and just didn't like the feeling of pillows. My air is only set at 7 and I don't know, it just felt kind of smothering to me having the pillows in my nose. After switching to the Sleepweaver élan and the small cushion it felt more natural to me. Just the action of not having my nose plugged up made it easier. Even though it does take some adjustment with the leaks. I am thinking of trying the wisp also, but not sure which headgear.

So just something to think about

[cosmo]

Try EPR turned off. I found it annoying.

Actually I thought about suggesting that but prefer to do one change at a time so that we can judge the results better.

I think for a newbie, cpap mode and no epr might be easier to adjust to than auto and epr at max. Cpap mode after you're self or lab titrated of course. Too many things going on with auto and epr. That is just based on my opinion and not based on any fact.

[Pugsy]

I think for a newbie, cpap mode and no epr might be easier to adjust to than auto and epr at max. Cpap mode after you're self or lab titrated of course. Too many things going on with auto and epr. That is just based on my opinion and not based on any fact.

We already decided cpap mode because her titration report mentioned sensitive to pressure changes.
Not doing auto mode at all right now.

EPR...you are thinking about how you feel about EPR and I feel the other way based on how I feel about it.
It's our own personal preference and you know that preferences come with the YMMV sticker.
That's why I explained how to adjust EPR and turn it off so she could decide which she felt more comfortable with.

I think if someone is feeling like they are suffocating and having trouble exhaling (and she is) then I think EPR is probably a good choice to start with and then maybe try turning it off to see how it feels.
Apparently in this situation from what I gather...EPR was not even turned on. So she seems to have been doing without it.
Even if it was on..reducing from 5 to 4 when someone is already feeling suffocated is going to get lost because there isn't much reduction there to start with.
She's having trouble exhaling against the pressure as well as feeling suffocated.
Let's see if we can get rid of the suffocation feeling and then she can decide if she likes EPR or not.

[pandatx]

Thanks guys. I made some adjustments with Pugsey's help and we'll see how tonight goes. Its just gonna be trial and error. I do believe I can get the hang of this. I'm excited to see how I do tonight

[BlackSpinner]

Thanks guys. I made some adjustments with Pugsey's help and we'll see how tonight goes. Its just gonna be trial and error. I do believe I can get the hang of this. I'm excited to see how I do tonight

Before you head to bed, spend an hour watching your favourite show or movie with the gear on and running. Teach your body and mind that there is nothing to be worried about it. By watching something interesting you are letting your subconscious get relaxed with the the thing on your face. It also allows you to say to your self in the middle of the night " WTF body/mind, you were ok with this during Dr Who, why are you complaining now?"

[Pugsy]

Got a quick update a few minutes ago...she did watch a movie wearing the mask with the machine at the new settings and she thinks it seems easier. Will see how tonight goes.

[cosmo]

I sure hope cpap.com is sponsoring you for being on here. Going way above and beyond

[DEXSUZ]

Panda (<-- My daughter Amanda's nickname!):

I tried a nasal and simply could not keep my mouth shut as I tried to sleep. I switched over to a full-face Quattro FX and life has been beautiful since getting used to it.

As far as getting accustomed to it, I spent a week monkeying around with it while out of the bed and reading or watching TV. I then spent a week taking mid-afternoon naps with it (no one at home, phone off the hook, bedroom shades pulled). After success in those realms, I spent another week going to bed without any CPAP system but having it ready when I'd inevitably awaken groggy at 1 a.m. or so. I'd immediately flip the mask on (before my brain woke up) and WHAMMO I would sleep the rest of the night with all systems go. Finally, I set a date on which I knew I had no obligations the next day and said to myself, "I will go to sleep with it on from bedtime until morning". With no anxieties or other things to drive me nuts I chose March 1 and ever since it's been almost totally a happily-ever-after story. 26 nights of 30 have been excellent with just a few mediocre nights.

Gradually, patiently, AND with a full-face mask worked for me.

Sleep tight!

Best of luck

[SleepWellCPAP]

Good luck!

[pandatx]

Pugsy is awesome, isn't she? If you only knew how many messages went back and forth between us today. I need to send her a fruit basket or something