Newbie, mask problems, please help!

[grandmma]

Hi, I'm new to all this, and I wish I'd read your forum weeks ago. To summarise my history, I had a test, found out I have sleep apnea, had another test to have an air pressure prescription, 2 weeks ago was given a machine & humidifier on 2 months trial, told this is your mask (purchase only, no choice provided), and voila. Have not been informed on choices, how to check AHI, or any other readouts. After reading your site I did try to access this information, but perhaps the trial machine is not set up for the user to read this, but rather the supplier by download. I'm probably atypical of many apnea sufferers in that I cannot sleep at the drop of a hat (or sitting on a fence for that matter), don't get to sleep easily, and wake constantly all night. I'm having no trouble breathing on the machine per se (only 8.5), although with the nose mask I'm constantly awakened when my mouth drops open or with puffy cheeks, and this mask (Fisher & Paykel nose), is a huge problem. I have a red mark on the bridge of my nose each morning which does dissipate by lunch time. However, between my nostrils is so sore and red the skin is now broken, and I feel the mask may have been too small. I went back & on a trial have taken a full face for last night, but it appears too small also - I kept waking with my mouth outside the mask, even when really tightened. Bridge is worse, nostril area is better though! Also my mouth kept opening, and my mouth and lips were so DRY all night and this morning. Humidifier is on 1 out of 5.

I use the machine all night, would not dream of giving up, and certainly don't wake feeling any worse than I did without it despite the broken and shorter sleep. But would love advice on whether to persist with maybe a different nose only & get a chin strap, how to get around the dry mouth if full mask, and how to avoid red marks if possible! Love your site and advice. Thanks a bunch.

[6PtStar]

If you will post your machine info some can have a bit more information to help. Some machines won't give you any information except for how many hours iot runs.

Generally if you can sleep with your mouth closed you will do a lot better. I would go to cpap.com and check out the sizing guide (get a ruller and a mirror)and see if what you were offered was the right size, as a place to start

[kteague]

Grandmma,

Looks like you're finding that the mask can be the thorn in the flesh for a new cpap user. Just due to so many variables in facial structure it's an inexact science, but did your supplier do any measurements on you to make more than a guess at if it was going to fit? An obvious misfit I would expect them to make right, but sometimes that does not happen. The longer you keep a nonworking mask the more the supplier may consider it yours rather than their mistake.

I have this independent nature that usually says, "I'll just do it myself" but I've been trying to discipline myself because I end up taking on stresses that were not mine to have. I'm all for attempting to not accept others' responsibilities when possible (tho I have found it is not always worth the hassle).

An approach I would try on the mask supplier would go something like, "As my sleep professional, I'm counting on you to equip me with a mask that fits me and does not have excessive leaks or bad pressure points and address all my issues." Request that the two of you take the time to make a better effort toward getting the right mask up front. That could include testing it while lying down in your normal sleeping position wearing the mask at your prescribed pressure. A hint when choosing a mask is to be aware of the hose routing - those that go down drive some crazy, those with swivels bother others. And the vent is another sticking point.

Unfortunately we don't know in the beginning to consider these things. And suppliers generally aren't going to suggest potential problems. But assume that they will want you to succeed and give them a chance to do their job. If in the end you are on your own, there's lots of mask reviews on this site to give you some points to consider.

Hope you quickly find a mask that works for you. Once you get that worked out, hopefully your difficulty getting to sleep and staying asleep will improve. If after a while it has not, you may want to look for other possible causes. You have a great outlook on this treatment. Welcome to the forum.

[grandmma]

Fitting? ...... fitting.....no, no such available here. Obviously never heard of the term. Seriously, I was assessed visibly and informed I was a petite nose mask size, one choice, by law has to be purchased. Not cheap either $2-300 from memory (I'm in Australia). Don't even know if it is refundable, don't imagine so but intend to find out. Like you, I like to take ownership, would like to check my results & measurements, constantly monitor etc. Don't like to rely on some "professional" who obviously is not as invested as I am in my own care.

[rested gal]

I like to take ownership, would like to check my results & measurements, constantly monitor etc. Don't like to rely on some "professional" who obviously is not as invested as I am in my own care.

grandmma, you're a lady after my own heart!

What machine do you have now? The full name of the machine should be written on the top of the machine.

What sleeping positions do you usually use... side, back, tummy? Toss and turn a lot, or pretty much stay put all night? Some masks are better than others for a lot of people, depending on which position(s) a person sleeps in mostly -- on their back or side or stomach.

[Moby]

Dear Grandmma,

I am distressed to hear your bad experience of the sleep industry in Australia. What business was it?

I was fitted at a private St John of God sleep clinic and they had a system of trialling different masks over 6 weeks before I had to buy.

I had assumed the Australian industry was better than what we hear about the DMEs in the US. Obviously there is no set standard in Australia, and I was lucky.

I think it's disgusting they forced you to buy a mask. Did they even try any other mask on you?

PM me if you wish. I'm from WA.

regards

Di

[grandmma]

The only reference I can find other than "trial use only" (!) stickers everywhere is RemStar Auto M Series. I can find the AHI, but the manual does not explain how I read this.

I always sleep on my side due to back problems if I don't. The mask is fine on my back, but I'm constantly waking due to leaks and slippage when I turn.

I generally move sides once or twice. I do take a mild sleeping tablet which previously enabled me to go through the night, but there's just too much mask action going on to enable that. I have purchased some tape today and I'll just have to experiment with taping my mouth shut (there's some that'd love to see that!).

Thanks Moby, with regards to the mask, no none were tried. This was at Air Liquide, I believe they're called. The sleep technician set me up, said he'd come back & trial others. Saw him again at check out time. So that one mask was the one they sold me, said it obviously worked & that was that. Wish I'd checked out the forum first but for some reason it never occurred to me that there was more information to be had, or more equipment to be had. But one night does not a trial make. My contact at the company is a lovely person, but that does not translate to good service. I've left a message for them, and intend to give them a polite earful on how I've been let down so far, and what I expect from now on (thanks to this site).

[Moby]

The sleep technician set me up, said he'd come back & trial others. Saw him again at check out time. So that one mask was the one they sold me, said it obviously worked & that was that

That makes me so cross. I wish they would try sleeping with the same mask for a few nights and then glibly repeat that phrase "obviously works".

The first mask they set me up with was a small comfort gel which "obviously worked" as I had a leak rate of 0.04 (expected leak rate 0.4) but by the end of the week I had an infected sore on the bridge of my nose where it pressed so hard.

I admire your attitude Grandmma. You will persevere and get this working for you I know, but I am p****d off that you have to jump through these hoops, and also sorry for those without your gumption and resourcefulness who would just say "I couldn't do the therapy because I can't wear a mask".

Grrrrrrr

Keep us posted how you get on.

regards

Di

[grandmma]

Thanks everyone, and thanks Moby. I'll definitely keep trying. I tried the loaner FF again last night after reading a lot of the mask posts in the CPAP FAQ sections. I found I could keep it on, and it was easier not to worry about my mouth. However, it has given me a raised really tender lump and red spot on the bridge of my nose, which will get nasty very quickly. I'm intending to definitely push back, and am also intending to pursue other sources and companies to find a better treatment and deal.

I'm 100% compliant, and definitely don't have trouble with the system per se, so I'm happy with that. But you are right, there are a lot of people who would quit rather than raise a fuss, or quit because they are not able to research their rights and demand them.

Will let you all know progress.

[mch441]

this sounds exactly like my first round with the cpap machine many years ago .i went for a sleep study found out i had sleep apnea then went back for another to get my pressure ,slept for about 1 hour that night.about 2 weeks later someone showed up at my door with a machine,a mask and water bottle that he called a humidifier.i tried to use it for about a week couldnt sleep thru the air leaks and sore face and nose.called them back to see if i could get any thing different and was told that this is what you get so deal with it!!

any way 10 years and largely because of what ive read on this site i have i have a dme that wants to help me ,a machine that is working very well for me ,have been thru an assortment of masks that i have paid not 1 cent for and am sleeping very comfortably between 7 and 8 hours a night !!!

[grandmma]

Sad to think how many people, especially older, have gone through what you did early on, and I'm currently experiencing, and had no concept of standing up for themselves against this? I know a lot of older people who would not dream of disagreeing with anyone they consider to be a medical expert.

Either way, that's not me thank heavens. In Australia we don't have DMEs, but (from my experience anyway) our medical specialists refer us to a particular company who handles the sleep & titration tests, and some are obviously better than others. It depends on your level of cover how much is covered by private insurance, but having said that it won't be very much either way, it is mostly on yourself. I'll certainly be taking my business elsewhere if the company I'm currently with does not step up to the plate.

They've already indicated that a mask trial is not the done thing, and that's not acceptable to me. They certainly don't have any to choose from, and the one FF I'm currently trialling is just one they had lying around. Not good enough by far.

Thanks everyone for all the advice, and especially for the assistance on all the various posts, it has been invaluable, and I'm only 2 weeks in.

[pillarpaul]

If you eventually get a choice, you might try nasal pillows. I had a nasal mask first and hated it - had same problems as you and everyone at work loved seeing the boss with red marks on his bridge every morning . Also, I had too much leakage for it to be effective. I have been pleased with the nasal pillows which work much better for side sleepers like me.

Paul

[Dgrendahl]

I started off with the Swift Nasal II, switched to the Ultra FFM, then the Hybrid then back to the Swift. I have found that it works the best for me. When some smart, wealthy individual develops a custom fit mask system, I shall be the first in line...no matter the cost.