out of sync with bi-pap -- long post

[tulajane]

I've been using a cpap machine for almost 2 years now and I'm on my 2nd machine. My pressure is 16.

My first machine was a regular cpap. I was using a full face mask for the 1st year because my pressure was so high that the nasal mask was uncomfortable for me -- couldn't breathe, felt like I was suffocating. I liked the FF but I had to strap it on really tight because of leaks and that was very uncomfortable and left me with marks on my face that almost never went away.

This spring I switched to a bi-pap machine and now my pressures are set to 16 on inhale and 12 on exhale. The nasal mask is now much more comfortable for me than the FF, but I've started experiencing a couple of strange phenomena:

1. I've started holding my breath when I first start to go to sleep and wake myself up when I have a frantic inhale. I was afraid that I was having apnea episodes.

The Nurse Practitioner at the sleep clinic said yesterday that this was not happening because of apnea. She said that I was still adjusting to the new machine. I've had this machine almost 6 months! Adjusting to treatment has not been a problem for me -- I use the mask every night and have always done so. I've had no problems adjusting to anything but a lack of facial comfort and even that has not kept me from using the machine. Have any of you ever experienced this problem?

2. I get out of sync with the machine and then can't get back in rhythm with it.

Since my machine is supposed to change pressure when I trigger it by breathing, I was concerned that my pressure needs have changed and that I was experiencing apnea episodes. Again, the NP said I was not having apnea episodes, but that she didn't think I was really getting out of sync.

I really am. I wake up because I'm inhaling while it's exhaling. I try to inhale harder and longer to get the thing back on track, and sometimes that works, but I've had to cut the machine off and turn it back on to get back in sync. Again, she wrote me off saying that it was all part of the "adjustment" period. Basically, she acted like I was just complaining to be complaining.

She told me I was a difficult patient!

Has anyone ever experienced either of these problems? Am I crazy???

Thanks for any advice!

Emilie

[Moby]

Sounds like you got a real b**** of a tec.

I'm sure someone here has the knowledge you need to sort this out.

regards

Di

[rested gal]

Emilie, the Nurse Practioner is...umm, how to say this tactfully...less than well informed. In my non-medical opinion, that is. LOL!!

1. I've started holding my breath when I first start to go to sleep and wake myself up when I have a frantic inhale. I was afraid that I was having apnea episodes.

The Nurse Practitioner at the sleep clinic said yesterday that this was not happening because of apnea. She said that I was still adjusting to the new machine. I've had this machine almost 6 months!

That's not always just a matter of "adjusting to the machine." Actually, what you described might be sleep onset centrals. Those are normal even for people without sleep apnea -- brain not sending a timely signal to "breathe now" as a person is drifting off to sleep. It might have helped you if the NP had offered that reassuring possibility to you...that it might be sleep onset centrals and that they are "normal"...instead of adding to your concern by talking about still adjusting (after 6 months!) to a "new" machine.

It's also possible that 12 for the exhale isn't quiiiiite enough pressure for you. You might want to leave the IPAP (inhale) pressure where it is, on 16, and raise the EPAP (exhale) pressure a whole cm or two. If it were me, I'd try that 16/13 or 16/14 for several nights to see if that takes care of it.

2. I get out of sync with the machine and then can't get back in rhythm with it.
---
the NP said I was not having apnea episodes, but that she didn't think I was really getting out of sync.

That, to me, is the stupidest thing she said. It is VERY possible to have a bi-level machine get out of sync with your breathing, IF the machine is not set up right for you -- most likely too short a time set for how long the inhale pressure can last -- or if something about your breathing (or possibly even your breathing + some masks) is sending untimely signals to the machine.

I wake up because I'm inhaling while it's exhaling. I try to inhale harder and longer to get the thing back on track, and sometimes that works, but I've had to cut the machine off and turn it back on to get back in sync.

Rather than inhaling harder and longer, try relaxing and breathing normally. A "regular" bi-level machine (which is what you have...yours is not an S/T set for "timed mode") will generally get back in sync with you after a few normal breaths.

But if you try to breathe harder and longer, the out-of-sync-ness is likely to continue longer. It's not up to you to get yourself in synch with the machine. It's the machine that is supposed to follow YOUR lead, so don't try to make yourself "do what the machine is doing." When it gets out of sync, ignore what the machine is doing and just breathe normally (not extra long inhales.) The machine should settle back in with you after two or three normal breaths.

If that keeps happening a LOT, a different brand of bi-level machine might suit you better.

But before I worried about "does this machine suit me", I'd first go into the clinical menu on the machine myself. I wouldn't want to be at the mercy of the NP with her stock answer of "it's just an adjustment period." I'd make it BE an adjustment period all right...with ME doing the adjustments to the machine settings myself.

Hang in there, as I know you will. It can be a lot more comfortable than what you're going through right now. The NP or whoever set the machine up for you in the first place probably didn't work with any of the "comfort" settings at all. Probably just put in the EPAP/IPAP and thought that was enough to bother with.

Sounds like this NP may not even know or (horrors) doesn't care that there are additional settings which could possibly make a big difference in getting the machine to behave more "in sync" with you.

I wish they had given you an M series BiPAP Pro instead of the M BiPAP "Plus". The Pro could give a lot more detailed information via the Smart Card and software, to help you see a lot more about what's going on. The Plus, even if it has a Smart Card stuck in it, records only "compliance" - hours of use. You already know you're using it. You need more info than that.

[tulajane]

rested gal --

Thanks SO MUCH for your reply! It makes a lot more sense to me than what I was told at the sleep center.

It's also possible that 12 for the exhale isn't quiiiiite enough pressure for you. You might want to leave the IPAP (inhale) pressure where it is, on 16, and raise the EPAP (exhale) pressure a whole cm or two. If it were me, I'd try that 16/13 or 16/14 for several nights to see if that takes care of it

I will check out resetting my exhale pressure again. I had already reset it from 8 to 12 -- I'll try 14 and see how that does. I wish I could still use my old cpap -- I liked the constant pressure that machine provided -- but my face just couldn't take the misery anymore.

IF the machine is not set up right for you -- most likely too short a time set for how long the inhale pressure can last -- or if something about your breathing (or possibly even your breathing + some masks) is sending untimely signals to the machine.

I asked about the inhale time and was told that the machine responded to me and that the time wasn't set. Is this what the bi-flex setting is? I also got a new mask at the sleep center -- just a new one, not a different brand -- and didn't have the out of sync problem last night, so I'm wondering if my old mask might have been part of the problem all along.

Thanks again for your comments. I really appreciate it.

Emilie

[rested gal]

I asked about the inhale time and was told that the machine responded to me and that the time wasn't set. Is this what the bi-flex setting is?

No. Bi-flex doesn't have anything to do with how long the IPAP pressure can last. Bi-flex is simply a feature that drops the beginning of the already lower EPAP pressure down a tad more...just at the beginning of the exhale..like C-Flex does in other types of Respironics machines. Bi-flex softens the start of the EPAP pressure each time you exhale. And eases the transition between EPAP/IPAP. I think of Bi-Flex as icing on the cake.

I use Bi-flex set at "3" for the most relief exhaling. Not because I need that relief. I use Bi-level with bi-flex enabled simply because it feels more like natural breathing (a feeling of no resistance when I exhale) to me than any other type of machine I've tried so far. I've not tried the Auto with A-flex yet...have heard it gives the same feeling of "natural breathing."

I experimented yesterday with my bipap auto...breathing in slowly and steadily, and counting the seconds that the IPAP pressure continued. As best I could tell, the IPAP can last about 4 seconds at the most, before switching to EPAP automatically, even if a person is still inhaling. Actually, it's hard (for me, anyway) to keep inhaling steadily that long! Normal inhalation time for most people is two seconds or less, I think I've read.

As a side note...that's why I said don't try to take extra long, slow, deep inhalations if a bipap gets out of sync with you. Just breathe normally and it will get back with you more easily.

I asked about the inhale time and was told that the machine responded to me and that the time wasn't set.

I'm sorry, I confused that issue for you. I was thinking of bi-level machines in general, several of which do have a setting that can increase/decrease the number of seconds IPAP is allowed to continue. The resmed bi-level machine has a separate setting for increasing (up to 4 seconds at the most) the length of time for IPAP (inhale) to stay in place unless the person exhales before the time is up.

The Respironics bipap comes with the longest inhale time (4 seconds, as far as I know...or perhaps 3 seconds) already built in it. That doesn't mean a person has to inhale that long. Just means that the machine will continue to deliver the higher IPAP pressure for as long as the person is actually inhaling...up to the maximum number of seconds it's set for. If the person inhales the normal 1 or 2 seconds and then exhales, the machine will switch to the lower exhale pressure right then with them. It won't keep on blowing the higher inhale pressure just because it could.