First few nights not looking so good?

[Rickgo]

I am new here and am really enjoying seeing everyone so involved and helping each other out. I have been on CPAP since 1995 and the best advice I got was when i first started. "Before you start using the machine at night, sit on your couch, put on your mask, start the machine and get the feel of it". "Starting out on CPAP is like getting a new pair of glasses, it takes a little time for your body to adjust to it." More to come later

[ImReallyTired]

So, I talked to my DME a couple days ago about all this. His suggestion is to let things be for say another week. That way he'll have 2 weeks of data to review (original plan was to review after 6 weeks). Next week sometime I'll send him the SD card and they can tell me what they think.

What I think is that this absolutely sucks!! My AHI has not gone below 18 in the 9 days I've been using this. No matter how hard I try, I cannot get the mask to not leak when the pressure gets up around 18 or so. On top of that, I can't sleep. I mean, I am sleeping, but only for like an hour or 2 at a time, then I wake up, and fall back asleep in a few minutes for the next hour or 2. All in all, I have to say, this has really not been a good experience so far. I desperately want to stick with this, but man it's getting hard.

I don't know if it's wishful thinking or what, but even with all the above I think I am feeling a little better. I haven't had to take a daytime nap in quite a few days, where before I started using this I would take 2-3 a day. What I don't get is, how can that be? Maybe it's because the AHI of 18 is still better than I was untreated?

Signed,

Confused but willing to keep trying.......I think.

[jgjones1972]

The mask leaking at the higher pressures seems to definitely be the root of all the problems. It hasn't been mentioned in this thread, but are you washing the silicone mask cushion every day in such a way as to make it "tacky"? A cushion that has oily residues (like the ones left on them after using moisurizing soap) or certain tap water residues (making the cushion look "cloudy") or facial oil will make the mask cushion feel kind of silky and make it virtually impossible to make them stop leaking at higher pressures. I mention this because I have had all kinds of problems trying to clean my cushion with chemically softened water. Also could be wrong mask size. You might even have to try different styles to find one that matches your facial features better. If you try nasal pillow chinstrap combo make sure it is rated for higher pressures (those on here who use pillows can make suggestions). Whatever you do, DON'T GIVE UP. Once you get this thing figured out, you'll be glad you didn't.

[ImReallyTired]

I haven't been washing the mask every day, but now that you mention it, the night before last was the best night I've had yet as far as leaks go, didn't have hardly any that night. The only difference was that night I washed my face thoroughly before going to bed, thinking maybe the oils in my face might be preventing a good seal. For some reason I did not do that last night, and the leaks were pretty bad.

So, another lesson learned. I will be making sure I wash my face every night before putting the mask on.

[Sleepster]

I mean, I am sleeping, but only for like an hour or 2 at a time, then I wake up, and fall back asleep in a few minutes for the next hour or 2. All in all, I have to say, this has really not been a good experience so far. I desperately want to stick with this, but man it's getting hard.

I had a very similar experience when I started just over a year ago. I was getting less sleep, not more. I was mouth-leaking and I had aerophagia.

I don't know if it's wishful thinking or what, but even with all the above I think I am feeling a little better.

I did the same thing. I couldn't be sure if it was real, but eventually I couldn't deny the fact that I was feeling better.

What I don't get is, how can that be?

Without CPAP we woke up every minute or so. Now, with CPAP, even if we can go an hour without waking that allows us to get at least some of the deeper restorative sleep we need to function.

After a few weeks I reached the crossover point. That is, the benefits of the CPAP machine outweighed the negative effects. Since then it's been a gradual improvement. Things are still getting better.

Confused but willing to keep trying.......I think.

Just remember that without CPAP therapy we will live a miserable sleep-deprived life and die early of a heart attack or stroke. There really is no choice for those of us who cannot hide behind denial.

I know people who do live in denial. They keep their CPAP machine in their closet. They are wimps who weren't willing to fight for their lives.

[ImReallyTired]

Thanks Sleepster, always good to know there are other people who have gone through all this and actually made it work.

I'm really close now. My AHI has gone down to a little over 10, which I realize still sucks, but it seems like it's getting a little better with each night. I'm also starting to sleep a little better now that I am figuring out the mask.

I've read over and over that 'it's all about the mask', truer words were never spoken. The nights where my leaks are at a minimum are the nights I sleep better and my AHI is better.

No matter what I try I still can't get rid of them when the machine gets up around 18-20 though. I just called and asked my DME for new, small mask instead of the medium I have now. Don't know if it'll help but figured it was worth a try.

A week or so more of decent nights and I'll have to change my username and profile pic!

[Sleepster]

I have a couple of questions.

Why is your pressure so high?

Have you looked into a hybrid mask?

[ImReallyTired]

Actually I have the same question. I have no idea why my pressure is so high. I just looked again, over the past 13 days the median is around 12, max is 18, min is 5. It' pretty much all over the place. I'm assuming it's due to the mask leaks. I get a small leak, pressure goes up, leaks gets worse, pressure goes up again......

Just for the heck of it I tried a nasal mask and a chin strap last night. That didn't last long. Even with the strap as soon as I fell asleep air started sputtering out of the corner of my mouth. After 2-3 times I gave up and put the full face on.

I'm not quite sure what to do next, I have a new mask coming so maybe that will help. (same mask, but small instead of the medium I have now).

Not familiar with hybrid masks, I'll have to go look.

[ImReallyTired]

Wow, these hybrid masks sound interesting. Anyone have any experience with them? Sounds like it might be just what I need.

My latest thought is to change the pressure range from where it is now (5- 20) to something like 8-15. When my pressure does go up to 18-20, it's not there long and I think it's the result of leaks.

Are there guidelines for setting the range? In other words if I see over the last couple weeks the low has been x, the median has been y and the high has been z, what's the best way to figure out what to change to?

[PaulaO2]

You have yours set to basically 'wide open'. So the low of 5 is of course when you start out. If the median is 12, then a low of 5, in my opinion, is just wasting time.

You could try a low of 10 based on the median of 12.