New to CPAP Lots of Issues!

[Random]

Hello Everyone,

I've been on my CPAP for just over a month after being diagnosed with Moderate sleep apnea and an AHI of 18. During my first sleep study I only slept for a total of 3 hours and did not enter REM sleep, so I am assuming my real AHI would be higher than that?

I started out with an Activa LT mask, and I found it very comfortable, but I would always end up breathing out of my nose. I tried a chin strap and it did not work for me, as air would still escape through my nose. I ended up exchanging my mask a little over a week ago for the Mirage Quattro full face mask. This is now a nightmare! It leaks like crazy, I have to tighten it so much to make it seal and then it leaves a big welt on my nose which seems to get infected as tiny little pimples break out all around it. I am also snoring inside the mask most nights. Is there anything I can do about these two problems?

I am in Canada, and my DM only allows one mask exchange within 30 days so I am stuck with this dreadful full face mask OHIP also only covers the basic CPAP machine so mine is not data capable and I have no idea if this treatment is helping me. I feel just as tired and miserable as I did before the treatment, except now I look horrible too, as I have big red bumps on my nose.

I have not been for my titration study since I got my CPAP, it is scheduled for May 26th and I'm assuming my machine will be set to the correct pressure, will this make a difference in my treatment?

Thank you very much, and sorry for the rank I am just becoming very frustrated.

[SleepingUgly]

Hi Random,

I started out with an Activa LT mask, and I found it very comfortable, but I would always end up breathing out of my nose. I tried a chin strap and it did not work for me, as air would still escape through my nose.

Do you mean "mouth" every place you wrote "nose" above? If so, the question is why? Are you too congested to breathe through your nose or do you just need a better chin strap? I am searching for a good chin strap myself, and a lot of people have recommended the Papcap.

I have not been for my titration study since I got my CPAP, it is scheduled for May 26th and I'm assuming my machine will be set to the correct pressure, will this make a difference in my treatment?

If they didn't do a titration, and you're not on an Auto-Pap, how did they know what pressure to put you on?! Did they just go for 10 or something?! Yes, the correct pressure should make a difference in your treatment.

Can you fight for a data-capable machine, ideally an Auto-Pap?

[Julie]

Loosen up your mask - you'll get leaks anyway if it's too tight, but at least it won't be killing you. Does it not fit because it's really the wrong size, or because you haven't played with it to adjust it, or because ??? If the DME will let you try on other masks at their place, and you can find one that works better (been using the Ultra Mirage a long time) then you could go to the Cpap auction (search this site for the link) and get another cheaper. I hope you're not paying Canadian prices for masks - they're way cheaper in the US and the dollar's at par now (plus you won't pay duty on medical stuff anyway).

[Nord]

Hi Random

You should register your equipment and pressures. There are many people here that can help you with issues...
There are also many Canadians here that can help you with DME's and buying issues.

Nord

[elena88]

Im so sorry to hear you having such a difficult time..

Three hours isnt much sleep, and you may very well have had many more events in REM.. but when you get titrated, if you can look FORWARD
to that, things should improve..

I have had all the issues you have had, and I know how miserable you are with the full face mask... I taped my mouth with the nose pillows,
but I had to cough a lot so went to full face.. so..

from pillows, to full face, back to pillows, to hybrid, back to pillows! You poor thing, dont have your pillows now.. Try to sleep on your side or tummy
if you cant wear your mask some nights.. and you can put little pieces of moleskin or t shirt cloth where your irritation is if you have to..

You still have three weeks to go, hang in there, once you get the mask and titration pressure all figured out, or the pillows, you wont be flying
blind. IT WILL GET BETTER!

Just come here anytime you need help...

[Random]

First, thank you for the replies, it makes me feel a little better that others have faced what I am facing and have overcome it.

Hi Random,

I started out with an Activa LT mask, and I found it very comfortable, but I would always end up breathing out of my nose. I tried a chin strap and it did not work for me, as air would still escape through my nose.

Do you mean "mouth" every place you wrote "nose" above? If so, the question is why? Are you too congested to breathe through your nose or do you just need a better chin strap? I am searching for a good chin strap myself, and a lot of people have recommended the Papcap.

I have not been for my titration study since I got my CPAP, it is scheduled for May 26th and I'm assuming my machine will be set to the correct pressure, will this make a difference in my treatment?

If they didn't do a titration, and you're not on an Auto-Pap, how did they know what pressure to put you on?! Did they just go for 10 or something?! Yes, the correct pressure should make a difference in your treatment.

Can you fight for a data-capable machine, ideally an Auto-Pap?

Yes, sorry I meant mouth for both of those. I cannot fight for a data capable machine, as it is a provincial insurance program and is pretty much set in stone. They would pay $720 towards a data capable machine, but only if it was from an authorized dealer, which charges outrageous prices and would leave me with $400 out of pocket costs which I could not handle. So I had to settle with the Resmed Tango, which is the most basic of basic machines I have been told.

As for my pressure, my sleep doctor set it at 8 and said use that for a month before doing my titration to give me time to get used to the mask and the machine itself.

How long did it take for you to feel an improvement in your fatigue and 'brain fog'? I am feeling just as bad as before I started treatment and it has already been a month, is this normal as well? My doctor said it would vary from person to person, but said many people feel better right away.

[Random]

Loosen up your mask - you'll get leaks anyway if it's too tight, but at least it won't be killing you. Does it not fit because it's really the wrong size, or because you haven't played with it to adjust it, or because ??? If the DME will let you try on other masks at their place, and you can find one that works better (been using the Ultra Mirage a long time) then you could go to the Cpap auction (search this site for the link) and get another cheaper. I hope you're not paying Canadian prices for masks - they're way cheaper in the US and the dollar's at par now (plus you won't pay duty on medical stuff anyway).

My first mask was actually free through my insurance, but they would not cover any of the actual machine itself. The only problem is after trying on the masks, the quattro was the most comfortable. It is only after wearing it for a full night that it actually begins to hurt my face and leave marks. I am not sure what is causing the welts, as it does not feel as though it is overly tight when I retire for the night.

[ozij]

Hi Random, welcome to the forum!
You're post reminds me of my first nights and firts maks....tough time that was.

I has welts on my face because I was sensitive to whatever matireal they put in the mold when creating the slicone seal. A 30-60 soak in soapy water solved that -- and I now do that before use with any mask I get - its that residue that some of us don't tolerate.

If you pressure setting is based on a guess, it may not be correct -- so at this point, don't expect to feel better, just try to concentrate on setting the mask properly -- it may take lots of patient fiddling to find the correct setting. There's something terrible counterintuitive about fiddling so much with the mask when all you want is to sleep - so you may want to set up a few "mask fitting sessions" in the afternoon or early evening -- or any other time when the aim will be fitting the mask, and not "let's get this fixed so I can sleep already!!! "

I also find it very helpful to my seal to route the hose from above my head (in my case: a hook in the wall, as shoe lace about a foot long hanging from the hook, a scruchy tied to the shoelace and the hose through the scrunchy. For me, the hose from above gives me far better control of leaks.

You may want to try different head pillows as well -- contour pillows, water pillows, a pillow dedicated for CPAP use (at least 2 of those exist) -- you'll have to find what works for you, but don't assume your present head pillow is necessarily the best solution.

Good luck

O.

[jweeks]

How long did it take for you to feel an improvement in your fatigue and 'brain fog'? I am feeling just as bad as before I started treatment and it has already been a month, is this normal as well? My doctor said it would vary from person to person, but said many people feel better right away.

Hi,

You are not likely going to see the fog lift or feel any better. The reason is that your machine clearly is not set anywhere near correct. The clues are (1) you are still snoring, and (2) you are not feeling better. This is kind of rotten to make you wait an entire extra month to get the titration study done. But rest assured that once you get the right treatment, you will start to feel better. I felt dramatically better on day one, and have only been getting better every since that day 18 months ago.

I have a more basic question. How much is your life worth? Clearly, you are not willing to spend $400 to save your life. Perhaps you don't realize what you are up against. If someone was holding a gun to your head, and asked for $400, would you be able to come up with it to avoid being shot? I bet you could if you looked at it that way. A sleep disorder is the same thing, except that it might take a few years for the bullet to travel through your system and cause a heart problem or stroke.

I started with the Quatro mask, and consider it to be a torture device. It isn't so much a problem with the mask as it is with the human head and face. Everyone is different. I went through 5 masks before I found one that worked, and I have since bought 2 more that don't work for me. So that is $800 worth of masks in my mask graveyard. If the nasal pillow mask was working for you, then consider going on cpap.com or amazon.com and ordering a Swift LT. Spend the $70 or $90 or whatever it is this week, and "git 'er done". Then trade in the worthless machine for something that is data capable. Or buy a used one from someone who gave up on their treatment. I guarantee that being awake for the next few years will more than make up for the cost. Get a 2nd job or deliver pizza for a while if need be to come up with the money. Your life really does depend on it. Save yourself before something really bad happens to your heart, or you have that stroke, or you fall asleep driving and run over a child in the street. Maybe even your own child. Think about what is at stake here.

-john-