Getting frustrated with response to higher pressures

Oh man. I suppose I should be seeing my doctor for these problems, but I'm not sure I have alot of faith in him. Maybe I should give him more of a chance. But he never seems to have much to say when I see him. And last time, I told him I feared I had a leak problem and he said "I don't tend to pay much attention to leaks". Huh???
In his defense though, he did have his nurse show me several alternative masks to cut down on the leaks. (But I chose to stay with the Swift pillow and make my own chin strap).
I was on auto 4/8 for about 6 months and was doing fine. But after Christmas, I was always at 8, so I began to try higher pressures.
Last night I was at 8/10. It was a horrible night. My leaks were controlled, my AHI was under 5, but I woke up at least once every single hour. I always wake up around 4:30 a.m. Sometimes I turn off the machine then, and then sleep off and on for an hour or 2 after that.
This morning, I decided to leave it on. At that point, my numbers were good. But after 2 hours longer, my AHI was higher. I'm going to assume its because I was awake for about 30-45 minutes during that time. (I've heard being awake can mess up your AHI).

Okay.......it seems as though the higher I go, the more I wake up all night. And I have the feeling I could set it higher every night, and would always end up at the highest setting.
Something just doesn't feel right to me. I'm tempted to go back to 4/8 for awhile and see if everything settles down.
I realize there is a possibility that I may be forced to go to a full face mask, instead of dealing with various ways of keeping my mouth closed.
But I'm really getting the feeling that there's something about higher pressures that wake me up all night.
I have alpha wave intrusion. I'm wondering if I'm just too light a sleeper to deal with higher pressures and the noise it makes.
I just don't know. But I'm very discouraged by it.
Plus, it doesn't help not having a whole lot of confidence in my doctor.
I know people have said "Set your APAP to 4/20 and do a titration test on yourself, but I honestly feel that there's something about me that just can't tolerate higher pressures........even if I end up at every higher pressure I set it at.
Dang. Just seems like I'm chasing my tail.
I think I need to just be happy with decent leak rates and good AHI, and not pay any attention to the fact that I always spend the night at the highest pressure. Does that make sense?

Could you give us a list of the combinations you've tried, and how long you've stayed on each, and what made you switch?

O.

Try straight cpap at 7 or 8 and see how you do. Lots of people can't tolerate the pressure variances that an apap produces. Try it for at least a week.


JeffH

Hi O,
I realize that I didn't give each setting at least a week, but when the setting would make me feel horrible, I just wasn't going to stay there for a week.
I began APAP treatment about 6 months ago, and was on 4/8, with AHI under 4-5 and leak rates under .20-.30. Because I started seeing from the machine stats that I was spending most of my time at 8, I began going up small amounts. I think I was on something like 5/8.2 for a couple months, with decent numbers, but still spending most of the night at 8.2. After Christmas I started waking up all the time, and the doc agreed to try CPAP of 8. I was only on that for 4-5 days, and felt like crap.
Went back to APAP of 5/8.4 for a week and my numbers began showing higher AHIs and I was still spending the night at 8. Then went to 5/9 for 3 days and then 6/9.4 for 4 days. No matter how high I went, my AHI worsened even though I was spending the nights at the nightest pressure.

After another 4 days, I went back to 6/8. Some days the numbers were good and others were bad, but still breathing at upper limit. Last night I went to 8/10 and had a horrible night.
Even when my stats might be good, isn't it bad to wake up 4-6 times a night and feel uncomfortable?
There's just something about those higher pressures that make me feel bad and wake me up alot.
Tonight I'm going to try straight CPAP at 8 without EPR, since I'm used to breathing that pressure without it.
I know everyone is going to say I'm nuts and irresponsible for making so many changes so quickly, but I've felt like crap for so long, its hard for me to stay at a setting that made me feel drastically worse in the morning.
I'm trying to be educated about why I'm making changes (i.e. bringing the 2 pressures closer together). But seriously, I think my body doesn't like pressure higher than 8, and maybe I should just be happy with some inconsistent data, if its mostly good, even if I'm always at the upper pressure for the night.

I apologize for the rambling. I sort of feel like I got greedy and wanted to see if I could make my AHI even lower (than 4), and it started this mess.
And I do feel that I just can't tolerate pressures higher than 8.
Thanks for listening.

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, AHI, APAP

Hi Country,

What you're saying sounds soooo familiar! I think I must have tried every possible combination over 6 months and even my sleep doc was thinking I might need to go to 14 after looking at the data (I was titrated at .

What finally worked for me (I'm not saying it's a solution for you!!!) is that I switched to straight CPAP mode with CFlex=2. I tried about 3 different pressures and am currently at 11. I found that after about a week at this pressure, my AHI started settling down and is now at 2 or below after about 2 weeks, and is occasionally up to 2.7. Changing the pressure to 12 did not improve things ... it made them slightly worse!

My leak rates are reasonable (no large leaks) and since it's my understanding that the machine compensates for leaks that aren't large leaks, I just quit worrying about them. I sleep better (wake up for a few seconds 1-3 times per night) and am less stressed about the numbers. I only download Smartcard once a week now.

Prior to this I was getting incredibly frustrated with the whole thing and feeling like it was never going to work right.

So, what I am suggesting is that just trying different ranges may or may not be the "right" answer for you ....

Mindy

Thanks Jeff,
You were writing when I was. As you can see in my post, I'm going to try the straight CPAP again tonight. It didn't work the last night, but maybe I just need to give it more time?? This is all so confusing, especially when my brain isn't working well to begin with!

Thanks Mindy!

Hi Country,

I think we were all writing at once!

For me straight CPAP took at least 2 weeks to really settle in and get good AHI.

Mindy

Hi Mindy,
For those 5 days when I tried CPAP, I just felt horrible all those days.
Is that normal, if its going to work?

Hi Country,

I don't feel qualified to comment on the "feeling horrible" part. I have too many other conditions that I often don't know which one is causing me to feel crummy. xPAP therapy is not a cure-all ... it can only help with symptoms caused by OSA. There are days I feel good and days I feel lousy and they don't correlate with my "numbers".

Personally, I'm going for the lowest pressure that will leave me feeling reasonably rested and results in an AHI at least below 5. I was titrated at 8, sleep doc put me on pressure range of 7-12 and am now on 11. I am considering trying to drop back to 10 to see what happens. I'm classified as having "mild" OSA so I wouldn't expect the treatment to have huge effects (though of course they could).

The effects I've noticed:

1) my brain is less "fuzzy"
2) I still am quite tired at the end of the day
3) Most mornings I feel ready to face the day whereas before xPAP I would feel toasted by Wednesday and like charred toast by Friday morning ... and it would take me the weeked to recuperate.

I know it can be a pain to be patient but small changes, made slowly, really do work better.

Mindy

[quote="Country4ever"]Hi Mindy,
For those 5 days when I tried CPAP, I just felt horrible all those days.
Is that normal, if its going to work?

i have only had my machine a week....still getting used to it. as far as leaks go last night was my first w/o any. but i had to tighten the mask a great deal and its not the best feeling.

i am set at 17/21 so when it gets to that levels i guess the only option is to have the mask pretty tight

Thanks Mindy......I'm the same way.......I have multiple problems that can make me feel lousy and its hard to sift them out.
Jeff, no, no other settings besides the CPAP of 8. I don't feel like I'm bothered by the exhalation pressure of 8, but I think I'll try the ERP at 1 and see if that helps.

I have slept sooooo lightly my entire life. My husband even moved to another bedroom with the pets, so I could have it as quiet as possible. So it wouldn't surprise me at all if just the slight pressure changes and/or the sound of air going through the tubing might wake me up.
I'll try to make a change and be patient. But its sure hard when I feel that my night's sleep is making me feel awful. But I'll give it a good try.

I can certainly identify with the feeling of straight 8, or higher tham 8 being troublesome. The fact that you do seem to reach it does not necessarily mean that's where you have to stay.

I am presently at a 7-8 range, and I limit my machine's response to apneas to 7.5. I have tried (and may even try again) straight cpap at 7.5 - but it just didn't feel right.
I don't have any exhalation relief, so I didn't try it.
Your aim is to sleep well - an if the pressure is waking you up, the treatment is not doing what it should do.

If it was me, then based on what you told us I'll probably try a 6-8 for a couple of weeks (I understand you don't feel that bad on that range) and then nudge the lower pressure, and only the lower pressure gradually closer to 8.

I wouldn't touch the top of the range at all.

When you first tried a fixed 8, did you use EPR? Fixed 8 with EPR (even at EPR=3) is not a bad idea either.

I wouldn't stay on anything the made me feel drastically worse.

O.

Thanks O,

No, I've never tried the ERP, but I know it made a big difference for Slinky, so I'm thinking of trying it.
Recently, all through the night, when I wake up, I quickly check the pressure, and 99% of the time, its been the upper pressure. So I'm thinking that anything much less than 8 is a waste of time. But anything above 8 isn't very good either. I was thinking of 7/8, but thought if it was that close together, I might as well go to straight 8.
I think you're right. We HAVE to take our feelings of well-being into account, and not just the numbers. Even if I feel better on lower settings, I guess I'm afraid I might not be helping my body out as much as I could.
Finding the right spot sure isn't easy!
Thanks for your suggestions.