From cpap to apap, and a few questions

[soverytired2]

Hello Everyone,

I am happy to share that my Kaiser respiratory tech immediately ordered me an apap, when I went to discuss the continuing problems I was having of still being tired, still having daily waking headaches, still waking up 2-3 times per night after a few months of treatment.

The difference with the apap has been amazing. For the the first 12 days since I got the machine, I have had no headaches, no waking, just lovely sleep. In fact I couldnt wait to go to sleep for the first time in my memory

The avg pressure on the machine has stayed between 16.4 and 16.8 (my cpap pressure was 12 and I knew I needed more). I know I need to order some software for this machine, but I'm not certain exactly what I need? Do I need the encore smart card reader AND the software or are they a bundle purchase? Both are a bit out of my budget since I had to pay my 20% for this machine too. The machine was definitely worth it.

For the past two nights though, I've developed a problem with my lips staying sealed. I do use a chin strap. I've woken up several times now and as I'm just waking I realize my lips though mostly closed are fluttering and my nose feels like i'm in a swimming pool which is exactly what has always felt like (since I began treatment) when my mouth opens in sleep. The pain in my nose is what wakes me. Yesterday and today I have had such a banging headache I can hardly stand it, just like I used to have before I was tested and began cpap. The system leak reading average has gone from 26.1 initially to 48.9.

Though I've tried several full-face masks I can never get a seal below my mouth for long. I am not claustraphobic at all I don't think, but I cannot stand the thought of taping my mouth. Just trying it for a minute causes racing heart and near panic. This nasal mask has been the only one that has given me decent sleep but now I'm back to terrible sleep because I can't keep my mouth shut. Are there any alternatives to taping that anyone has tried?

The tech said to call her if the higher pressures caused the mask not to work so when I spoke with her today she suggested a hybrid and put it on order. I'm not sure it will be that successful given my struggles with ffm before, but I'm willing to try.

In the meantime while I wait for the hybrid does anyone have any suggestions for helping me keep my mouth shut? My husband has had several but he's in the dog house now

Thank you, Paula

[kteague]

At least you haven't lost your sense of humor (though your hubby may beg to differ). Hopefully that Hybrid mask will work out for you. I was unable to tape due to a chronic cough but I did use the Poligrip strips for a while. The space between the strip were just enough to allow me to cough softly. I've also experimented with various homemade straps.
Kathy

[cinco777]

soverytired2 wrote

Though I've tried several full-face masks I can never get a seal below my mouth for long. I am not claustraphobic at all I don't think, but I cannot stand the thought of taping my mouth.

Have you tried or considered the Fisher & Paykel Flexifit 431 or 432 (and maybe some others from them with similar design)? My 431 and 432 are Full Face masks and fit under the chin. This FF mask fitting really works for me. Comfortable, secure/stable, and I can fix any leaks when they occur (my mask rarely leaks). The FF masks that pressed against my face/chin just below my lips (like the ComfortFull2) were always uncomfortable when tightened enough to stop leaks, and were not secure during the night with me resting my head/face against a pillow while side sleeping. I have few problems with my F&P 431/432 FF mask when sleeping even if I accidently bump it during the night.

I did try a nasal mask and used chin straps (worthless for me) and mouth taping (white tape, blue tape, etc). Taping worked OK but I prefer my F&P FF masks to taping and a Nasal mask. I mouth breathe at times and the F&P 431/432 FF masks are very accepting of my mouth breathing - they remain secure with no leaks. Everyone on this forum has their own personal favorite mask, and they are all different! There must be 100s of different masks and with all the choices in headgear, pillow & seal sizes, and fitting arrangements, there may be 1000s of combinations. It is try and try again in finding the right mask, headgear, taping solution, etc., for you. Persevere and Good luck.

[soverytired2]

Hi Kathy - Polygrip strips? I've only heard of taping so I'll do a search on the forum. I admit to being tired of the chin strap, mask, and now taping or polygrip regime. If the sleep I was getting for those few short days hadnt been so great I would give up but I know it can be better. I really did like the nasal mask, as I could still take a drink in the middle of the night if I got thirsty, but good sleep is much more important to me.

Hi Cinco - I have tried the 431, which my sister uses and loves. I do like how it goes under the chin but it seemed to have a meltdown in the middle of the night when I tried it. I havent tried the 432 which the resp tech might work if I couldnt tolerate the hybrid so I will consider it next if the hybrid doesnt work for me.

Thank you both for your suggestions and support! Now off to try to research card readers and software.
Paula

[Wulfman]

rested gal's collection of threads about sealing one's mouth to prevent air leaks:

viewtopic.php?t=8011


Den

[cinco777]

soverytired2 wrote

I do like how it goes under the chin but it seemed to have a meltdown in the middle of the night when I tried it.

I'm curious on what happened to you and the Flexifit 431 in the middle of the night. What do you mean by "meltdown"? Can you provide more details on the problem(s) that you experienced?

Thanks.

[soverytired2]

I tried the 431 for a total of three nights. Initially the fit was good each night and it seemed to seal pretty well. however after about 3-4 hours of sleep the seals seemed to fail completely. The mask fairly hovered over my face, with the sides seeming to blow out and the mask made some horrible embarrassing noises. Tried taking off the mask and cleaning it as well as my face just in case it had gotten oily or something but it didnt help at all. The only way I could get it to seal after that was by holding it on my face. I wondered if whatever material they use stretches or something when it reaches a certain temp such as after being on warm skin after a certain time. I don't use ramp feature so the pressure at that time with the cpap set at 12 was constant so I don't think it was the pressure. Maybe I didnt actually give it a fair trial as I only used it for that short time.

Thanks for the rested gal's links! Off to check them out...Paula