Before getting mask & machine

[napstress]

Hi, All.

My best friend's sister went for a sleep study, suspecting apnea. I have written up some things she will want to know before she meets with her doctor to discuss CPAP therapy. I welcome any suggestions for things I might add and corrections to any inaccuracies you might spot. I want to keep it simple, so I didn't get into the finer points. Just the basics to help her be successful quickly.

Thank you!

Here it is:



Welcome to the wonderful world of hoseheads! Here are a few pieces of information you might find useful before you meet with your doctor to get your mask and machine.


A. Mask:
1. Fitting: When your doctor or the Respiratory Therapist fits you for a mask, request to mimic your typical sleep conditions. I sleep on my side with my mouth open and my recommended titration (pressure level) was 4–9cm/pressure. But they fitted my mask when I was sitting in a chair with my mouth closed and at the minimum pressure. As it turns out, when I roll onto my back, my cheeks fall back toward my ears, creating a leak. When my mouth opens, I need a larger mask. When the pressure is high, there is a greater chance of leak. So before your fitting, you might consider: Do you mainly sleep on your side, back, or stomach? Do you sleep with your mouth open or closed? What does your doctor recommend as your maximum pressure? Then, ask to be fitted under those conditions. My doctor had a hospital bed in her office, covered with stacks of paper. I told her I wanted to try the mask on lying down. She said the bed was covered. I said I'd lie on the floor if I had to. She cleared off the bed.

2. Exchanging: One thing I wish I knew is that, if your mask isn't working out, you have 30 days to exchange it for another model. If I could do it over, I would try a mask out for a week, then try another for a week, and a third for a third week. Then I would settle on the one that I liked best. (You want to give each one a week to have time to adjust). When first starting out, we have three months to reach compliance if we want insurance to help pay for the equipment. Because it is the interface between you and the machine, the mask is the most important element for success on CPAP therapy.

3. Comfort: There are four types of mask: nasal pillows, full-face mask, hybrid, and nasal mask. I only have experience with the first two.

a. Nasal pillows:
i. Keeping mouth closed: If your mouth is open, then the air is leaking and you are not getting good therapy. A sign that you might be opening your mouth when you sleep is that your mouth and/or throat can get really dry. Some people naturally sleep with their mouths closed, and others train themselves to do it. Those who cannot do so use either a chin strap, a PAPCap http://www.pur-sleep.com/content/?id=44 , or tape their mouths shut with 3M tape.

ii. Sore nostrils: This is easily treated with Lansinoh, which you can find in the baby section of the grocery aisle (it's for chapped nipples from breastfeeding).

b. Full-face masks:
i. Sore on bridge of nose: The mask can rub on your nose and create a kind of combination sore/zit. I use a band-aid and a PAD-A-CHEEK mask liner http://padacheek.com/PAC_Maskliners.html There are other mask liners out there, but they are disposable and can shift around between the mask and face. The PAC is washable and reusable (less expensive and better for the environment).

ii. Mask shifting: The mask sometimes gets pushed to the side for side- and stomach-sleepers. Some people find a contour pillow (from Target or Walmart) or buckwheat-hull pillow enables them to "hang" the mask over the edge of the pillow in a kind of notch, which takes the pressure off of the mask. I've tried both and found that just mooshing my regular pillow around works best.

iii. Tighter isn't necessarily better: Even if you get a mask other than the Mirage Quattro, these directions work for most full-face masks: http://maskarrayed.wordpress.com/taming ... e-quattro/


B. Machine: When your doctor recommends a machine, make sure it is a data-capable machine. If not, you can request one. A data-capable machine records your nightly data. You can then download the software to read the data and be able to find out if you have excessive leaks and other handy information. Doctors tend mainly to be concerned that you are meeting compliance, but there is other relevant information that you will likely want to know.


C. Sleep Study Reports: You will likely find it very helpful to have a copy of your full sleep study (Polysomnography (PSG)) and titration study reports. You are entitled to it by law, so just ask your doctor for it. This information will come in handy.


D. Sensations:
1. Breathing: One thing I wish my doctor had told me is that the sensation of having to breathe over the air pulsing into your mouth is normal. I thought there was something wrong with the machine. It feels a little strange at first, but you can adjust quickly.

2. Acclimating: Some people find themselves delaying bedtime b/c they are anxious or dreading the machine. You can help yourself adjust by wearing the mask for a few hours a day while you are awake—watching TV or whatnot. You need not worry about "cheating" to look like you are meeting compliance; doing this for a short time will get you meeting compliance sooner and is worth it in the long run. Another thing that helps is getting your mask other equipment all set up a few hours before bedtime and then waiting until you are sleepy before masking up.


E. Why CPAP therapy is important: If your oxygen saturation on your PSG drops lower than 90%, that means that, as you age, you will be more vulnerable to stroke than the average bear. While we all will die at some point, most people would rather do it in a way that does not involve someone having to change their diapers for the last several years of their lives.


F. Support: A super-helpful forum:
CPAP-Sleep-Apnea-Forum.html

[ReadyforRest]

Great post, napstress.

Under "Masks", there's also a total face mask.

[chunkyfrog]

The total face mask is often forgotten, but is a possibility when the patient is sensitive around the center face area.

[2 B Sleeping Soundly]

I second the great post! Your best friends sister is lucky to have someone so thoughtful and helpful to guide her in this Hose Head journey!

John

[SleeplessInOttawa]

If I could do it over, I would try a mask out for a week, then try another for a week, and a third for a third week. Then I would settle on the one that I liked best. (You want to give each one a week to have time to adjust).

Wow that seems like a good idea but very hard! I'm on my second night of a 30 day trial and have been ok with the Mirage SoftGel Nasal Mask for the last couple of nights. Is it the consensus of the forum experts that trying three masks is the optimal approach?

[SleeplessInOttawa]

Bump - do most CPAP veterans recommend trying three different masks during the 30 day trial? So far I'm doing good with my nasal mask...

[JO'M]

Bump - do most CPAP veterans recommend trying three different masks during the 30 day trial? So far I'm doing good with my nasal mask...

I'm not a veteran, but I don't think there is a set number to try. Some people seem to go through many before finding one that works. I tried out four before finding one that worked for me, this was over the course of about 7 weeks (I'm on wk 12 of my "30" day trial)

[jencat824]

Great list! I wish someone had helped me with such a list 12 years ago. I wanted to address that item "B" include a specific wish for a machine that is a name brand and software used by the 'wiser ones' of this board. I wish I had found this board prior to ordering my new machine (my 3rd) it is an ICON - as much as I like it, the 'data capable' part is not working out so well for me. I have read here alot about the S9 Autoset and it seems very data capable and since a lot of the posters here have that machine they are able to help one another with interpretatiobn of data readings. I am ordering the software for my machine since I haven't been able to get anything else to work. Sorry for such a long explanation, but I posted to stress that having an exact machine in mind, not just data capable, might prove more helpful.
Jen

[chunkyfrog]

It took me over 20 masks and over 2 years to find the cloth mask I currently wear.
I ordered this one the day it became available.
Fortunately not everyone is so difficult to fit.
Some folks find the right mask very quickly

[SleeplessInOttawa]

I'm not a veteran, but I don't think there is a set number to try. Some people seem to go through many before finding one that works. I tried out four before finding one that worked for me, this was over the course of about 7 weeks (I'm on wk 12 of my "30" day trial)

Thanks for this. Maybe I lucked out and found a mask that works for me on the first try - fingers crossed.

[SleeplessInOttawa]

It took me over 20 masks and over 2 years to find the cloth mask I currently wear.
I ordered this one the day it became available.
Fortunately not everyone is so difficult to fit.
Some folks find the right mask very quickly

Wow that sounds like a grueling search you had to go through. Congrats on persevering all the way to the end!

[jzap]

Hi, All.
(Big Edit)
a. Nasal pillows:
i. Keeping mouth closed: If your mouth is open, then the air is leaking and you are not getting good therapy. A sign that you might be opening your mouth when you sleep is that your mouth and/or throat can get really dry. Some people naturally sleep with their mouths closed, and others train themselves to do it. Those who cannot do so use either a chin strap, a PAPCap http://www.pur-sleep.com/content/?id=44 , or tape their mouths shut with 3M tape.
(Big Edit)

Hi Napstress,

Much of what you have to say about Nasal Pillows also applies to Nasal Masks. I have found that there is another alternative to the solutions that you describe for the problems of air leaking out of the mouth. I was very skeptical when my sleep tech at my titration handed me a nasal mask. She told me that the trick is to train your tongue to maintain the separation between the nasal airway and the mouth. If you lightly lay your tongue on the roof of the mouth and suck a little air out from the top of it, the suction cup-like effect will keep your tongue in place, and as long as you maintain the separation you can only breathe through your nose, and it doesn't matter if your mouth is open. If you loose the separation, your lips will flap like a horse, and it will wake you up. I have only had it happen a few times over the past two months since I started therapy.

[napstress]

Thanks, everyone. I have added your suggestions to the list.