Questions after first night of (attempted) therapy

[danBfree]

So, my equipment should now show up below ... I tested at 12 cm, my doctor had the APAP set with a range of 6 - 13. The ramp is set at 4 cm, 20 minutes. (Isn't that a really wide range, from 6 - 13?)

First, the DME supplier (a CPAP-only specialist, not a general DME shop) insists that small leaks (out of the bottom of the mask, along the jaw) are okay, and are in fact preferable to a very tight mask that might cause irritation to the face. I've never read anything along those lines before - certainly when I did the titration test at the sleep center they had the masks extremely tight, and were going for ZERO leaks. Is there anybody here who intentionally allows small leaks?

Secondly, when I actually tried to sleep, it was hopeless. I felt like I was laboring very hard to exhale - got up after an hour or so, read some posts on here, tried not using the ramp and adjusting the CFLEX to 2 (it had been on 3) - still, nothing. Every time I got close to falling asleep, I'd sort of inhale and then wake up at the "bottom" of that breath because it felt like my body wouldn't exhale naturally and I had to force the air out. And the thing that worries me even more is that the pressure it is at that I'm trying to fall asleep with - 6 cm - is HALF of what I tested at, and what I'd be using if I had a straight CPAP instead of APAP.

Is this normal?

-Dan

[Linda3032]

Hi Dan, I will try to offer some suggestions and I'm sure others will too.

I'm not familiar with the M series, so does ramp automatically come on or do you have to turn it on? With a ramp of 4, you certainly don't want to use it.

If you find 6 too low, then bump it up to 8 or 9.

Did you try to turn cflex off entirely?

IMO, a few leaks would be better than getting a huge sore on your nose. If a few leaks aren't irritating you and helps you to be comfortable, then you could allow them and battle them later.

IMO, if you tried straight cpap, I think you might find the constant pressure too high at first. It might be harder to tolerate until you become acclimated. Later, you won't even notice it.

Hang in there, it will get easier.

[RichCMH]

I'm at 13 and my ramp starts at 4. I have several choices, in 5 minute increments up to 20 minutes as to how long it takes to go from 4 to 13. I think 4 is a good choice, less pressure to deal with when you are trying to fall asleep. If I'm not really tired I go for 20 minute ramp time.

Apap 6-13. You need at least a 6 and max of 13 to keep your airway open as your Dr thinks and I don't see it as too extreme.

As for trying to exhale, just relax, it'll come to you. You may want to try using your machine a few minutes before bed, just to get used to it. Again remain relaxed.

Leaks - if it is really small and only one and you can't feel it on your hand at say 6-8 inches from the point of leak, then maybe it would be ok, as long as the leak does not get worse or it is not too distracting. Obviously you do not want any leaks. Finding and fitting the right mask is the challange.

I don't have the machine, but principle is the same. Hope this all helps.

[danBfree]

Linda -

The ramp is manually turned on, so keeping it off is not difficult. I did not try turning CFLEX off entirely because it (allegedly) helps breathing out, and it feels like that's what I'm struggling with - but it can be turned off, and maybe I'll try that tonight. I don't actually know how to re-set the pressure to have its low end at 9 instead of 6 but I'm sure somebody here can tell me how to do that ...

I guess what I can't quite come to grips with is that it feels like I'm laboring to breathe out now, even with the ramp at 4 or the starting APAP pressure of 6 - if I increase the pressure, won't that make breathing out harder?

[Linda3032]

From what I've read, laboring to breathe can be caused by too low of starting pressure.

It also can be caused by clfex settings. Some of us turn it completely off. Others find 3 comfortable, others find 1 comfortable. It's a comfort setting based on how you exhale.

I'm sure there are other reasons, like too high of pressure, but since you are starting out as low as you can go (like Limbo), then that shouldn't be the reason.

[rested gal]

I felt like I was laboring very hard to exhale - got up after an hour or so, read some posts on here, tried not using the ramp and adjusting the CFLEX to 2 (it had been on 3) - still, nothing. Every time I got close to falling asleep, I'd sort of inhale and then wake up at the "bottom" of that breath because it felt like my body wouldn't exhale naturally and I had to force the air out.

Hi Dan,

If you are having difficulty exhaling against a pressure of 6 (with or without C-Flex) and that difficulty doesn't get better with a few more days "practice" time (try acclimating to it by sitting up and watching TV while using the machine and mask) I'd ask my doctor to switch me to the Respironics BiPAP Auto with Bi-Flex.

I'd set that machine with the operating mode of "AbFLE" turned on, the EPAP at 6, IPAP at 13 (same range as your present autopap prescription), "Flex" set at 3, the "PS Max" set at 7, and ramp turned off. I'm not a doctor. That's just the machine I'd ask for and the settings I'd request if I were having the breathing out difficulty you described. It's up to you and your doctor to see if he'll prescribe that specific machine for you.

The "bipap" part of that machine will give wonderful relief each time you exhale. It will use the lower EPAP pressure throughout the entire exhalation. A bi-level machine waits until YOU begin to breathe in again before it switches to the higher IPAP pressure. The "auto" part of it will find what pressure is needed throughout the night.

Actually, it will find BOTH separate pressures independently as needed --the inhale (IPAP) and exhale (EPAP) pressure.

The "bi-flex" feature will drop the already lower EPAP pressure down even more at the very beginning of each exhale...icing on the cake comfort for me.

I've used straight cpap, autopap, bipap, and the bipap auto. The exhalation relief bipap machines give is wonderful, in my experience. While I can do fine with autopap and C-flex, there is just no comparison to the easier exhaling (almost like breathing out into an empty hose) of a true bi-level machine.

That machine might be worth a try if you are not able to get used to breathing out against even the relatively low pressure of 6 coming in at'cha.

Good luck. It really does get easier.

[Craig-Tx]

I recently started on CPAP myself. I am lucky that my pressure is only 7 cm H2O. But I will tell you that if you are used to breathing without any pressure, even 6 or 7 can seem like someone is trying to inflate you like a beach ball.

My first few nights were miserable, I only got a few hours of sleep. But I can tell you after a few weeks, I was able to slip the mask on and breath normally. Now when I wake up, I usually have to momentary question if the machine is even blowing. I'll often put my hand in front of the exhaust holes to make sure. It will take time for your body to get used to this unusual treatment, but give it time, don't get discouraged, and keep at it.

You're lucky you've found a great community to discuss your problems with. The advice you can find here is priceless. Also, feel free to talk to your doctor as well. Remember it is YOUR treatment.

As for the leaks, small leaks are not a problem treatment wise. The xPAP machine can still pressurize the mask even with quite a large leak. My RT who set me up with my CPAP even hooked the machine up to a manometer (pressure gauge, I think that's what it's called.) With his hand over the mask, he preceded to open his hand to create a sizeable leak. I was surprised how much leak was required before loosing pressure.

Of course leaks aren't a good thing. Minimizing them is best, however, not to the point where you have to tighten the straps with a crow bar. Also, if the leaks are blowing in your eyes, or irritating your skin where the leaks are, they should definitely be stopped.

Good luck, and if you need any advice, ask away.

[Slinky]

Well, I'm not an xPAP pro, will only finish my 5th month on xPAP on the 8th of this month. BUT - quite frankly, I could give a rat's rear about minor leaks below the eyes from cheeks down. I will not tolerate ANY leak around my eyes tho. NONE whatsover.

My best nights for restful sleep and low AHI (including several 0.0 AIs) have been w/a fairly high leak rate and a SLIGHT "breeze" below the nose around my upper lip.

Its not been the smoothest 5 months, the first 30+ days I was about ready to toss all the equipment thru my local DME's window! MOST of my problems have been due to humidifier problems. Like Murphy was riding my shoulder. Toss in a broken mask, no replacment parts, a real uncooperative, PITA of a DME .... Murphy has had fun! But I can very truthfully say I am sleeping better now than before xPAP. And feeling MUCH more rested than I have in YEARS.