Using APAP for Almost a Year with No Imrovement!

I have been struggling with feeling tired all the time, along with waking up and getting a fresh morning start, for much of my life. Also, over the past few years my migraine headaches (mostly upon waking in the morning) have worsened. The almost daily headaches, along with the constant lack of energy, has had a major impact on me. By the way, I am 53 years old, have no major health problems, and not overweight (5'11, 164 lbs.).

About 15 years ago I had a laboratory sleep study. My recollection of what my readings were are now fuzzy. But I do remember that they did not think that CPAP would help, but they did recommend turbinate reduction, uvuloplasty, and deviated septum surgery. I did the surgery and saw little improvement (after a very uncomfortable, long recovery).

Last year (March 2014) I decided to again see a sleep doctor. He could not get insurance approval for a laboratory sleep study, so they did a home sleep study. This study showed that I have moderate apnea (about 18API). Almost a year ago, I started to use an APAP (Philips Respironics System One 560P with a humidifier). I was compliant for a about 4 months, but never saw any improvement. I then stopped using the APAP for about 3 months. Last October I saw the doctor again and he blasted the insurance for not approving a laboratory sleep study. At that appointment, he tweaked the settings (6 to 14 pressure i believe) and followed up in December. In December, he again tweaked the APAP settings (8 to 12 pressure) and set up another appointment that will be coming soon, in March.

I am frustrated because it has been almost a year and I have had no improvements with how I am feeling. In light of the fact that I am not doing well, shouldn't my sleep doctor be seeing me more often in order to tweak the settings and get me feeling better? My headaches are better, but still affect me most days (the headaches improved a while I was not using the APAP last year, go figure). Ever since I have had this machine last year, I constantly would see wide fluctuations of the AHI 3 to 15, with about an average of 6-7).

An interesting observation I have made is that it seems that the more sleep I get, the worse I feel (If I sleep 4-5 hours, I seem to feel better, more refreshed and have less headaches than if I sleep for 8 hours). Another observation I have made is that in general it seems that the longer I sleep, the higher my AHI is.

Earlier today I discovered the SleepyHead software and installed it. Data from January 10th to present was downloaded. Here are the main highlights:
1) It seems like there is not a lot of consistency in the numbers from day to day. Some days are better, some worse.
2) My AHI for the past 30 days is 5.18. Many days are 6-7-8, some days are 2-3-4-5, some days are 9-10-11-12.
3) The pressure settings by my doctor presently are: 8-12 (this seems a low to me, at one time
4) My Philips System One APAP has a "split night" mode. Shouldn't we by trying this setting, since some titration can be done in this mode to see the effect of different pressure levels.
5) Several weeks ago my APAP supplier suggested that I have an oximeter test with the while using the APAP. She suggested that I might benefit by having supplemental oxygen. It has been about 4 weeks since she contacted my doctor, and still the test has not been completed. Could it be that I am not getting enough oxygen in spite of using the APAP and that I need supplemental oxygen?
6) As I look at my SleepyHead readings, it does not appear that central sleep apnea is a major part of things.
7) Since I am so frustrated, I am thinking of changing the pressure settings myself and seeing the effect that this would have on my SleepyHead readings. Would this be a bad idea?

Thanks!

Could you please post a couple of images of the night's detailed report...a good night and a bad night?
Not the overview or statistics but the detailed report.
This thread explains how and what we like to see (don't need all those graphs unless we ask).
viewtopic/t103468/Need-help-with-screen-shots.html
and how to use imgur to host the images
https://sleep.tnet.com/reference/tips/imgur

Also please add your equipment to your profile like I have mine
wiki/index.php/Registering_Equipment_in_User_Profile
Please use the text option instead of the icony option (the icons are tiny and hard to make out models without extra effort.

You will not see improvement with the start and stop method of XPAP. A change does not happen over night either.

Thanks for showing me how to do this. I think I got it right! Here are the screen captures of a good day and a bad day:

Have you ever tried a full face mask - your leak rate is not that great.

Without actually seeing some reports, judging by what information you posted, it's probable that your range of pressures is inadequate and you're having events that the machine can't respond to in an adequate manner. It could be you don't have snoring or flow limitations that precede your hypopnea or apnea events (APAPs trigger pressure increases mainly on snores and flow limitations). Is your machine hitting your maximum pressure? I would suggest increasing your minimum pressure to maybe 10 cm. for a number of nights and see what the reports and numbers look like.
I would also suggest taking control of your own therapy. No, it's not a bad idea to change your own pressure settings.....especially if they result in better therapy.

But, you need to also look at leaks. If you're using a nasal mask (as opposed to a full face mask), you may be losing your therapy air out your mouth at night and increasing pressure may only make that worse.......unless you're feeling starved for air and are mouth-breathing.

Lots of things to consider and for you to review in your reports. The sooner you take control, the better you'll feel.


Den

.

And, now that we HAVE seen some reports, I would definitely recommend moving the minimum pressure to 10 cm. and suggest trying to minimize the leakage.


Den

.

Thanks for the replies again. I thought that the pressure seemed a little low. Raising it to 10 sounds like a good idea to me. What do you think about the higher pressure? It is only 12. Any harm it putting up to 16 or 20 (my understanding is that the default setting for my machine is 4 and 20!

yenrac wrote:4) My Philips System One APAP has a "split night" mode. Shouldn't we by trying this setting, since some titration can be done in this mode to see the effect of different pressure levels.

Actually, if you use split night mode, you will be reducing, by a minimum of two hours per night, the amount of time available during each night for sort-of-titration. Aren't you too early in your investigation to want to do that?

The leaks aren't horrible and in fact the only large leak time in the 2 above reports is the Feb 8 report at roughly 3:40 AM and it didn't last all that long.
The bulk of the up and down of that top leak line is from machine pressure increasing which increases the vent rate and this is a normal part of the up and down we see in leak lines when people use auto adjusting pressures and doesn't automatically mean mouth breathing or a change in masks is needed.
Unless the leaks are waking you up...they aren't bad enough to negatively impact therapy or the machine's ability to respond and record events.

For some reason you have nights were your pressure is sub optimal and other nights the pressure settings seem to do a good job.
The 2 most common causes for marked differences in pressure needs are sleeping on one's back and REM stage sleep or maybe a little of both.

If it were me I would increase the minimum 1 maybe 2 cm and see what happens.

Now will this minor adjustment be the miracle you want to see? I don't know because so often feeling the good numbers can be ever so elusive for a lot of people. It isn't all about the AHI but the AHI is a good starting point when we see something that needs improvement.

There are also other factors that impact how we feel and how we sleep...like
do you take any meds, if so what?
do you wake up often during the night, if so any idea why?
do you have other health conditions?

Oh..I see no reason to increase the maximum pressure unless you see it maxing out at 12 for prolonged periods of the night.
It doesn't want to go there at least on these 2 reports here except one brief period.
You can change it if you wish...but if it doesn't want to go up there it won't go up there and it doesn't look like it wants to go there on these reports. It won't hurt anything to have the maximum higher if it never goes there it doesn't really matter.
The older machines used to chase leaks and events with more pressure but these new machines don't do that now.
I suspect if you raised the maximum that you still wouldn't see the movement upwards beyond what you see here now.

Thanks for the response on split mode. It sounds like it is not such a good idea.

I do seem to have some nights that are better than others as the graphs show. The part that is difficult for me to make sense of is that I often feel much worse in the mornings when things looked good on the graphs!

To answer your questions:
There are also other factors that impact how we feel and how we sleep...like
do you take any meds, if so what? No medications.
do you wake up often during the night, if so any idea why? I have no trouble sleeping nor do I typically wake up. The more I sleep the worse I seem to feel in general.
do you have other health conditions?No health conditions

I like your idea of increasing the lower pressure. I will go back and check all my graphs to see how often my upper pressure is topping out.

yenrac wrote:Thanks for the response on split mode. It sounds like it is not such a good idea.

It certainly has its uses, but I don't think it would give you much useful information right now.

yenrac wrote:Thanks for the replies again. I thought that the pressure seemed a little low. Raising it to 10 sounds like a good idea to me. What do you think about the higher pressure? It is only 12. Any harm it putting up to 16 or 20 (my understanding is that the default setting for my machine is 4 and 20!

For the time being, I'd leave the maximum where it's at.
Use the 10 - 12 setting for a few nights to a week and see what the results look like. Even if you end up with the minimum and maximum set to the same setting (12 cm.) for awhile would also be informative. But, the minimum is what you need to adjust and experiment with now.


Den

.

Thanks Den. I will increase the minimum setting to 10 for sure.