Adjusting to new pressure settings...

[joeljjk11]

So I adjusted my pressure settings on Thursday due to the results of my sleep study coming in. I reduced the pressures significantly and basically have been feeling anxious and not like myself since I did this. Today though I actually feel somewhat 'normal' and a ton better. Has anyone else experienced similar issues when adjusting pressures on their machine?

It seems like my brain and body has taken a few days to adjust to the new settings. I have also noticed that since these adjustments I am much more sensitive to caffeine and it was keeping me up at night over the weekend. Before I could drink caffeine all day pretty much and it would not affect my sleep.

[yaconsult]

Yes, it's common for pressure changes to take some time to have an effect.

We have two sources of data - how we feel, and the data recorded by the machine. It is always useful to use one to crosscheck the other. When we feel rested and our recorded data looks good, then we know we're on the right track. Many people have "good" nights and "bad" nights. It's the trend that is important.

[Goofproof]

You give us no info!!! In reality pressure changes should be made in small stages .5 to 1.0 cm steps with a weeks worth of data at each pressure, doing this prevents yo-yoing. Jim

Using the software will tell the tail.

[joeljjk11]

My doctor did not say anything like this. I went from 16 min - 20 max to 10 min - 11 max.

[Wulfman...]

So I adjusted my pressure settings on Thursday due to the results of my sleep study coming in. I reduced the pressures significantly and basically have been feeling anxious and not like myself since I did this. Today though I actually feel somewhat 'normal' and a ton better. Has anyone else experienced similar issues when adjusting pressures on their machine?

It seems like my brain and body has taken a few days to adjust to the new settings. I have also noticed that since these adjustments I am much more sensitive to caffeine and it was keeping me up at night over the weekend. Before I could drink caffeine all day pretty much and it would not affect my sleep.

My doctor did not say anything like this. I went from 16 min - 20 max to 10 min - 11 max.

So, you're pretty close to using straight pressure. That could be why you're feeling "somewhat normal" and "a ton better".

Give it some time.


Den

.

[joeljjk11]

Although I am feeling better, my AHI numbers are absolutely terrible with these reduced pressures. Last night they were 11.5, night before that 9.1. When I had the higher settings they were around 5-6 most nights, still bad but better than what I have now. Not sure if I should just stick it out with the reduced pressures or slowly change my settings to what they were.

[Pugsy]

Did you ever get one of those overnight recording pulse oximeters to evaluate what your oxygen levels are doing each night?

If the O2 is holding well...and you are sleeping well and feeling quite decent and those really are centrals but are very brief centrals...don't worry about the "numbers" right now.
If they are indeed centrals and strictly related to the cpap pressure itself then there is always the chance that with time they will reduce.
I have my doubts because I don't think the machines are often that wrong especially since we seen the reduction with more pressure but it sounds like your doc is going to take the slow boat to ASV evaluation.
And it wouldn't be totally impossible for the machine to be wrong.

If it were me I would first evaluate O2 levels during the night. I would want to make sure that the O2 was okay and no damage was being done. That would be my starting point on my decision as to whether or not I wanted to invest time at the lower settings because I don't know that I trust that those events are central or not. But that's me.
If I was feeling good and sleeping well...I might be willing to give things time to see if the good feeling holds and while it would be hard to ignore the "numbers"...I could do it as long as I felt considerable improvement over what I felt without cpap.

Your situation is rather unique and you do have those meds that we know are likely playing a big factor in what is going on. Could they also be playing with your respiration to the point that it is confusing the machine...maybe.
Wish Morbius was around to maybe evaluate the flow rate on breath by breath status because I am just not that experienced at it.

For those of you wondering about various pressures in between what is now being using and what we ultimately came up with (that 20 cm) it's all documented in some old threads and you might want to take the time to read up (and it would take a lot of time) because there has been a lot of experimenting and giving each setting a suitable time frame to see if it works well or not. Might also read up on the meds involvement. There's a lot more going on here than what we see in just this thread. A lot of time has already been spent with various settings both in apap mode and settings which essentially mimic cpap mode. I don't feel up to giving you all the short version but before blasting OP for this latest substantial change (per the doctor)....take the time to educate yourself on what has already been tried.

[joeljjk11]

Thanks for the help Pugsy. One thing I have noticed is that I will wake up in the middle of the night on my back. This leads me to believe that the pressure is not high enough to stop apnea events on my back. When I had the settings at 16-20 I was feeling pretty good and sleeping solidly through the night. My AHI numbers were also consistently lower. I have a feeling that the higher numbers are legitimate because the pressure is not high enough. I called my doctor and left a voicemail, I will see what she says regarding all of this.

[Pugsy]

I have a feeling that the higher numbers are legitimate because the pressure is not high enough.

As do I and I think they are obstructive and not central which is what your doc wants to call them.
These machines can be fooled but overall they don't have a history of being so easily fooled.
Given the response at higher pressures (if they were centrals they shouldn't reduce) I tend to think the machine is correct in what it is flagging.
Now getting your doc to believe it...that's a whole other big problem. They don't often want to accept that they might be wrong.

Now if that recent sleep study (done in lab) with tech and your using your cpap machine called them centrals and not obstructive. That takes precedent over the machine and that's why I would want the details of that cpap used titration study and I think if it were me I would want a second opinion....Morbius to actually evaluate the raw data.

Your entire situation is unique.

Anyway you could build a wall and make sure you stay off your back? It's hard I know and the old tennis ball thing messes with sleep itself that it isn't what I advise to do. Waking up multiple times a night because of discomfort is going to totally FU the reports because of the wake ups.

[joeljjk11]

I will try the wall method with pillows and see if it helps. Thanks.

Joel

[Pugsy]

The bed pillows will tend to move...been there and done that...unless they have some weight to them.
You would be surprised what we do in our sleep in terms of moving crap around.
I did it a few times to see if supine sleeping made any difference in either my pressure needs or events.
I used a buckwheat hull pillow because it has some weight to it. I still would sometimes move it enough to end up on my back but sometimes I was totally successful and ended up in same position I went to bed in.
I was unwilling to do tennis balls or anything that caused discomfort. The whole idea is to stay asleep and waking up a gazillion times with pain just didn't seem logical and my sleep was already fragile due to body pain. I found that a slight roll (maybe 45 degrees onto my back using the buckwheat for support was actually quite comfortable on my back) was enough to have some success with my experiment.

I found out that all my events and pressure needs are related to REM stage sleep and staying on my side really didn't make any difference so I don't worry about position but I understand for some people it does make a substantial difference and worth pursuing. I did it for about a month just to get a long term idea...had to do it when hubby wasn't home (over the road truck driver because of the amount of room my "wall" took up in the bed.

Good luck in your experiment. Find some comfortable way though. The whole idea is to sleep without waking up if at all possible. Taking 6 weeks to get "used to" tennis ball pain crap just doesn't seem a smart way to go IMHO.

[joeljjk11]

Pugsy - do you think that I should increase the pressure back to what it was? I was not waking up at all in the middle of the night before. The only thing is that I was very gassy in the morning because of the high pressures.

[Pugsy]

I am hesitant to recommend because I don't have access to some stuff that I really would need to know for sure about before I would blatantly disregard a doctor's advice.
Even if I had the raw data from the sleep study I have no way (the software needed) to be able to view it and even then I simply don't have the expertise to know what I am looking at.
Even if I had the breath by breath stuff from your machine reports (copy of your SD card) I don't have the expertise to be able to look at the flow and know for sure if they were obstructive or central or SWJ (sleep/wake/junk).

So I hesitate to tell you to go against medical advise. I just don't feel it is my place to do that and I don't have any concrete reason to tell you why.

I can only offer what I might do in a similar situation and even then I would be on the fence if it were me.
I don't go just by "numbers" myself. Mainly because I know that numbers can lie to us. One of my best night's sleep and one of the very few "miracle days" that I have had came with an AHI of 10.2. Go figure that one.
It was a fluke I know but it happened. Felt amazing all day and just knew for sure that when I checked the reports I would see AHI 0.0. Back then I only checked my data in the evening because I didn't want my day clouded with the data first thing in the AM. You know the old self fulfilling prophecy thing.

With the sudden drop from what you were using to the pressures the doc advised I wasn't surprised that you experienced some discomfort and adjustment issues. I once experimented with APAP minimum from 10 to 13 (went up in 0.5 increments and stayed a week at each setting) to see if it made any difference in AHI or how I felt. It didn't so I decided to go back to 10 from that 13 and the first 2 or 3 nights I felt uncomfortable with 10. It definitely affected my sleep quality but then I readjusted to 10 cm minimum and I was good.

If you sleep better and feel better at the higher pressures....if it were me then I would probably be using the higher pressures because sleeping better and feeling better has always been my primary goal...not a perfect math score. Now if the higher pressures are causing aerophagia then if it were me I would take a hard look at how much the aerophagia was a problem and probably make a compromise because again...sleeping good and feeling good is still my primary goal.

Now...on the chance that this initial discomfort at the lower settings will fade away as you get used to it and the absence of the aerophagia makes it an advantage and you actually start feeling better and sleeping better then maybe the lower pressures are a worthwhile compromise. I think I would at least try a couple of weeks to say that I gave it a good try and in my mind I would know that I gave it a good try.

Sometimes we have to make compromises...and that's why my primary goals take precedence over "numbers" unless the other numbers are making a huge difference in how I feel or sleep.
I don't know for sure that your doc is wrong...I don't know that she is right either.
If your sleep is totally in the toilet now and you feel like crap during the day...then it's not a worthwhile compromise. If you think things might be slowly improving at these lower settings...give them a little more time and try not to dwell on the "numbers" as the end all marker.

When I went to bilevel therapy I didn't know where to start so I picked some settings and after just a couple of nights I got a "decent' report result and decided to stay with it because I knew that it would/could work. At first I had more bad nights than good nights but I resisted the urge to change things and eventually the good nights started to outweigh the bad nights.
After 6 weeks the bad nights were rare and my overall AHI had dropped from around 7 most nights to around 2 most nights without ever changing a thing. Took 3 weeks to notice the change in numbers on a small part and 6 weeks to see the full big change. There is some truth to the "give it time" thing. Now of course in some situations no amount of time will fix an issue but if we are close to what we want and we feel good and sleep well...then giving it time might be worthwhile.

So I am on the fence about what to tell you...especially now that you mention the aerophagia thing.
Unless you just feel absolutely horrible at the new settings after 7 nights...I would maybe try another 7 nights.

Finally...your meds are still likely a big factor here and nothing we can do about it right now.

If you are going to make a change in anything...make one change at a time. Remember Science 101...keep your variables to a minimum in any experiment...like if you are going to try to build a wall...don't build the wall and change your pressures on the same night.