New to CPAP (long and rambling post)

leshii · Post by **leshii** » Mon Mar 19, 2007 9:15 am

Hello everyone. I've had my CPAP machine for a week now and it's been slow going. I know there's a learning curve but I thought I'd seek out some advice. But, keep in mind that I'm very new to this.

My machine is set to a pressure of 18 which seems way too high to be comfortable and with that pressure there's absolutely no way I can stop leaks. I know some leaking is normal but it is irritating, literally and figuratively. It also wakes me up and once I begin to get big leaks (usually at the sides of my chin near the straps) any adjustments I make just make it worse. So I end up taking the mask off for the rest of the night. In seven nights, I've only slept with it on for the entire night once (~7 hours). A couple of nights I couldn't fall asleep at all and did not use it. Other nights are somewhere in-between (usually 3 to 5 hours worth).

Here are the problems, in general. If I start the machine at 18, the mask literally blows off my face so I ramp it up from 4. I can't fall asleep during that ramp up time because I know at some point I'll have a leak so I'm sort of waiting for it (and then after I get to 18 I'm sill anxiously waiting for the leaks to begin).

When the leaks do begin I try to adjust the mask by moving it or tightening the straps but what happens is that I end up with the mask way too tight. However, if the mask isn't really tight, the pressure forces the leaks immediately. I don't end up with any marks on my face that last past my morning shower, but it's tight and uncomfortable when I'm sleeping.

I've developed neck pain just in this past week because I find myself arching my head up towards the headboard to fix any small leaks. My old pillow doesn't seem to "work" anymore. And I used to fall asleep on my side but eventually make it to my back. But I can't fall asleep on my side because the mask won't stick to my face when I'm on my side (from my face being "mushed" so to speak).

Any ideas? I have a follow up appointment with my sleep doctor tomorrow and I think I'm going to beg him to turn the pressure down but the man problem is the leaks and I don't think he'll give me anything but the normal "adjust the mask" thing. Which I've done and done and the mask just ends up on the nightstand after a while.

Also, what is the consensus on using anxiety medication to help one calm down and sleep? I know sleeping pills are not recommended. I always used to fall sleep within two or three minutes. Now it's taking me two to three hours and I feel worse than ever.

And I also have this phantom mask feeling on my face all the time now. That's not a problem but it's definitely weird.

Thanks.

NightHawkeye · Post by **NightHawkeye** » Mon Mar 19, 2007 10:10 am

Leshii, welcome to cpaptalk.

The first thing you need to do is go to Target and get some of their memory foam pillows. Not the regular ones, but the ones which have two different foam materials; a "softer" side and a "very firm" side. Using the firmer side has helped me quite a bit. That'll help keep the pillow away from your mask.

The second thing you need to do is call your physician's office and tell them that you are not getting much use out of CPAP because of the pressure, you've learned a little about machines and that you want to change to a BiPAP machine because that is the machine normally prescribed for the high pressure which you have. (Hint: Tell them to prescribe the Respironics BiPAP-auto for you.)

As for the mask . . ., why are you using a full-face mask? Are you absolutely sure you need that?

Regards,
Bill

Guest · Post by **Guest** » Mon Mar 19, 2007 11:04 am

[quote="NightHawkeye"]

As for the mask . . ., why are you using a full-face mask? Are you absolutely sure you need that?

Regards,
Bill

I will ask my doctor tomorrow about the bi-pap machine. I don't know why this was prescribed; I was just assuming that my doctor had a reason (I know this isn't always a good idea) for prescribing a CPAP machine.

As for the mask, I am a heavy mouth breather and, again, the mask was prescribed. From talking to the doctors and the sleep center people, they all uniformly agreed that a full face mask was important for people who sleep with their mouths open. And through research I was under the impression that that was correct.

NightHawkeye · Post by **NightHawkeye** » Mon Mar 19, 2007 11:59 am

Leshii wrote:I will ask my doctor tomorrow about the bi-pap machine. I don't know why this was prescribed; I was just assuming that my doctor had a reason (I know this isn't always a good idea) for prescribing a CPAP machine.

OK. What you need to know is that physicians often will not prescribe BiPAP unless you are not compliant with CPAP. (There are a host of reasons for this, but it really comes down to cost and insurance.) Once they tell their physician that they are having difficulty using CPAP at the high pressure, then most folks report their physicians readily change the prescription to BiPAP.

Leshii wrote:As for the mask, I am a heavy mouth breather and, again, the mask was prescribed. From talking to the doctors and the sleep center people, they all uniformly agreed that a full face mask was important for people who sleep with their mouths open. And through research I was under the impression that that was correct.

OK. That's something you'll have to decide for yourself, Leshii. I'll tell you though that I also considered myself a mouth-breather and my initial mask was a full-face mask, but for most of my therapy I have been using nasal masks. It also seems to me that most folks here who start out with full-face masks convert to using nasal masks, to resolve some of the very same problems you are experiencing, Leshii. I'm not trying to talk you into using a nasal mask, and I'm sure not trying to tell you that using a nasal mask would be easy for you. For us determined mouth-breathers, using a nasal mask can end up being a goal in itself. I will tell you though, that if there is any way you can use a nasal mask, then that is most likely what you will ultimately choose.

Hope this helps a little.

Regards,
Bill

Julie · Post by **Julie** » Mon Mar 19, 2007 1:41 pm

I think the man must know if he needs a FF mask and to encourage him not to use it doesn't sound like a great idea. What he could try instead might be a nasal mask PLUS tape, which works for many people and will keep his mouth closed (a lot better than most chin straps), but all things considered just to tell him a FF is no good is irresponsible.

track · Post by **track** » Mon Mar 19, 2007 2:02 pm

I wonder if you have the best size of UMFF mask. I measure for a large but use a medium and it seals very good at 18 while laying on my side...I just did a test to verify. I find that washing the face with Ivory soap and shaving right before bedtime with a cheap shaving cream that has no moisturizers gives me a good seal most of the night.

NightHawkeye · Post by **NightHawkeye** » Mon Mar 19, 2007 2:26 pm

Julie wrote: . . . just to tell him a FF is no good is irresponsible.

Huh? Did I do that?

rested gal · Post by **rested gal** » Mon Mar 19, 2007 3:06 pm

leshii, I'm not a doctor or anything in the sleep field. But I sympathize with you about how uncomfortable a FF mask can be for some people, especially if a person likes to sleep on their side.

I used FF masks my first six months. Did not sleep comfortably at all with them. Later, I switched to taping my mouth and using a nasal pillows mask -- the Breeze nasal pillows. I was able to sleep much more comfortably that way. I use an autopap and the pressure occasionally would go up to 13 or so, but most of the night uses just 9 or 10. The best mask I've found (for me) to let me sleep comfortably in any position, including with the side of my face flat against any kind of head pillow is the Twilight NP by Invacare. That's a nasal pillows mask that used to be called the "Aura." My second favorite nasal pillows mask is the ComfortLite2 by Respironics.

You'll hear DMEs (and doctors) say that nasal pillows interfaces can't be used at high pressures. But they certainly can. Nasal pillows often seal BETTER at high pressures than a conventional nasal mask (covers the nose) or FF mask (covers mouth and nose) do. There's a lot less perimeter to have to seal with nasal pillows.

One of the regular posters (Titrator) on this board used BiPAP with an inhalation pressure of 18. He used the Breeze nasal pillows successfully, and also the ComfortLite2 nasal pillows.

So.... if you're able to breathe through at least one nostril ok when laying down, and if you decide to do something creative about preventing mouth breathing, you can use non-FF masks that might let you sleep much more comfortably than what you're going through now.

Straight pressure of 18...whew. I'd be asking the doctor to change my prescription to this specific machine: Respironics BiPAP Auto with Bi-Flex.

The "bipap" part will give you relief from that kind of high pressure each time you exhale. The "auto" part will auto-titrate all night, sensing from your breathing what pressures you actually need.

That could help considerably, as you might not need the full 18 except for brief times during the night -- perhaps only when in REM and on your back. The majority of the night, it might be that just 12 or 14 does fine for you. The BiPAP Auto will vary the pressure as needed AND will drop the pressure each time you exhale. Very comfortable...two-machines-in-one.

Oh, and here are some interesting topics about methods people use to prevent mouth breathing in their sleep:

Links to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

WearyOne · Post by **WearyOne** » Mon Mar 19, 2007 3:25 pm

Hi, leshii, and welcome. I'm new to this stuff as well, about three weeks in. I can't help much with the pressure problem, since I'm only at an 8, but I just wanted to lend some support to another newbie.

Oh, and I had the "phantom mask" thing, too--felt so weird!! I just realized that I haven't felt it in a couple of days. I was also getting headaches right above my neck, and neck pain, every night from the headgear. Got to the point I was taking Advil every night before I went to bed just to hopefully keep the pain at bay. The last two nights, I haven't taken anything and didn't get a headache.

As far as taking something for your anxiety, I have been taking Ativan at night because if I don't, I don't sleep--until last night. I didn't take anything and slept three hours. Doesn't sound all that great, I guess, but it was a step forward, at least. I also took Ambien a couple of times, but the Ativan seemed to work better for me. It also takes me at least two hours to go to sleep, even if I do take something. (The other night, after about 2-1/2 hours, I had tried, and tossed in the floor, all three of my masks. Almost said forget it, but ended up picking one and giving it another go!)

Hang in there and keep us posted!

Pam

leshii · Post by **leshii** » Mon Mar 19, 2007 3:27 pm

Thank you all for your comments. I have a follow-up appt. tomorrow and I will talk to the doctor about options as far as the pressure and the machine. When I tried 18 for the first time it literally blew the mask off my face. It gets easier to deal with as the night goes on, usually, but I hope there are other options.

I found a recommendation on these boards about PoliDent strips and I might try those if nothing changes from my appointment tomorrow (the machine, the pressure, or the mask).

For the record, I don't dislike the mask itself, I just don't know how well it works with this high pressure.

Hopefully I'll be enlightened tomorrow. I'll be interested to see if I'm actually doing any better, too.

Thanks!

Rabid1 · Post by **Rabid1** » Mon Mar 19, 2007 4:51 pm

leshii,

Welcome to the board.

Mask adjustment, both physically and mentally, is often the most difficult part of CPAP therapy.

We know the UMFF will seal at 18cm, but how to get it to seal for you is the question. The above advice about washing your face, shaving, and cleaning the mask seal all worked for me.

Once you've done all that, set your machine to 18cm (no ramp) put your mask on, and start making strap adjustments until a good seal is achieved. Once you have a seal, don't tighten anymore. Experiment with different sleep positions, and make MINOR strap adjustments to correct any leaks. Do this at least an hour before bedtime, so you won't feel anxious about going to sleep.

When you've got your mask tweaked to perfection, get up and go watch TV or read or something. When bedtime arrives, put that puppy back on and go to sleep, knowing you won't get the leaks! It worked for me.

Rick

Mask

Additional Comments: Strictly a side sleeper