The Cpap process is very frustrating

[Rainmom17]

Nearing my 3 month mark and feeling frustrated. I've explained in previous posts that when I've tried to raise my minimum pressure - just a tiny move from 7.5 to 8 - that my ahi and sleep get worse rather than better. I tried it again this past week just to see if maybe I wouldn't have the same experience again, but sadly the same thing has happened - more tossing and turned, higher ahi. I keep trying because I'm not really satisfied with my sleep and numbers with the minimum st 7.5. Its not "bad" (average ahi around 4), but I would love for it to be better. I'm just feeling disappointed that I don't feel much better and I still tend to consciously wake during the night more than I did pre-cpap. Guess I'll reset the minimum back to 7.5 and hope after a few more months I feel better.
You've all been helpful in the past. Don't really know that I need any responses to this post. The reality is that I know there are lots of people like me who struggle to get decent results despite being highly compliant. I suppose this post serves to show them they aren't alone!

[MaxINTJ]

Nearing my 3 month mark and feeling frustrated. I've explained in previous posts that when I've tried to raise my minimum pressure - just a tiny move from 7.5 to 8 - that my ahi and sleep get worse rather than better. I tried it again this past week just to see if maybe I wouldn't have the same experience again, but sadly the same thing has happened - more tossing and turned, higher ahi. I keep trying because I'm not really satisfied with my sleep and numbers with the minimum st 7.5. Its not "bad" (average ahi around 4), but I would love for it to be better. I'm just feeling disappointed that I don't feel much better and I still tend to consciously wake during the night more than I did pre-cpap. Guess I'll reset the minimum back to 7.5 and hope after a few more months I feel better.
You've all been helpful in the past. Don't really know that I need any responses to this post. The reality is that I know there are lots of people like me who struggle to get decent results despite being highly compliant. I suppose this post serves to show them they aren't alone!

I don't seem to be getting anywhere either - at least I know one problem stopping me, and that's too many large leaks. Are you having any issues with leaks? I know they disturb my sleep every time I get one, so I feel like crap every day.

[Pugsy]

You know if you are waking often during the night you aren't going to feel so great even if the numbers were below 1.0.
Fragmented sleep will trash sleep quality no matter how low those numbers are.

Also...about those numbers and waking frequently during the night...maybe some of those events aren't real. Meaning they might be sleep/wake/junk events flagged due to irregular breathing while awake.
What you might do if you have the presence of mind to do it is each time you wake up in the night for any reason is to reach over and turn the machine off and then right back on. This will create a break in the therapy line that is easily seen and you can then see if any of your flagged events are in close proximity time wise to the break in therapy. It's better than clock watching and trying to remember when we woke up.

Now as to why you keep waking up....any number of reasons there. Might be cpap related...might be pressure related...might be sleep apnea related...might be outside factors...might be unknown factors.

The fact your numbers go up with pressure increases makes me think more along the lines that your body isn't comfortable with the pressure and probably more arousals and thus more chance for SWJ event flagging.

Do you feel up to doing some work using the microscope to evaluate your flow rate on the graphs?
It takes a lot of zooming in and learning what is asleep breathing vs awake/semi awake breathing....so some hard work/education is involved.

MaxINTJ knows about arousals... More than he would like to know for sure. It's his major problem.
He's learning too.

[AMESS]

Going to medical supply place with machine and mask. Leaks at 30 feel like a wind storm--cannot control. Two nights now and not sleeping. Maybe Resperonics amara view not for me--maybe operator failure. Got clinical manual--tried to fix myself--cannot do. Not enough experience here to know. Will fill u in Max when I get back.

Gitmo look out. Replacing water boarding with cpap set up.

[Cpapian]

Just on the off chance .........Rainmom do you get a lot of pressure pulses?

When I had the System One I found them intrusive and they woke me up. I could hear the pressure pulses and would have to turn the machine off to stop them. One night I had 158 pressure pulses. Too much.

When I switched to the airSense my AHI dropped with the lower (doctor prescribed) pressures. And no pressure pulses. Less awakenings.

[chunkyfrog]

Before cpap, most do not wake with every event, so letting a few through so you can sleep might be worth a try.
If therapy is causing too many wake-ups, we need to focus on making therapy less disruptive--without removing it.
Mask liners or switching to a less onerous mask can help.
They don't always design those things with love . . .

[Rainmom17]

Thanks for replies.
Max: I do have problems with leaking. I haven't tried any other masks but probably need to. I have an Amara View but haven't tried it yet - haven't had a night where I felt like I could be pretty wrecked the next day, just in case it doesn't work out. I'm not optimistic about it because I apparently have a narrow nose which makes it tricky for some. I've tried to adjust my straps to higher pressures, but still can't stop the leaking when the pressure rises.

Pugsy, I'm interested in looking at the flow rate, as you suggested, but have no idea what I need to do. Please let me know. Below is my data from a couple of nights ago - kind of typical for a minimum pressure of 8.



Cpapian: I don't know what pressure pulses are, but looking at my info, it looks like I get about 8-10 a night. Way less than the amount you had, so I'm thinking this number isn't a concern.

Chunkyfrog - I do have a mask liner. It's nice and has helped the comfort level enormously. As I mentioned to Max, I should probably try some other masks.

Thanks everyone!

[Julie]

Hi, I don't know if this applies to you, but if keeping your head (more) up vs on your chest might be an issue that closes your airway, have you considered a soft cervical collar? It does a lot at once (head up, airway open and jaws closed) and many people here use them.

[Rainmom17]

Julie, I've been thinking about that, since I've read about it on here. I read once that wearing cervical collars weakens the neck muscles over time. Have you ever heard this? Anyone think this is a concern? My neck muscles are always tight, and I definitely don't want to mess them up any more than they currently are.

[Pugsy]

Okay, let's show you how to zoom in on the flow rate so you can see each breath.

Look over on the left where the Statistics show and look for the Events tab (it's next to the detailed tab) and click on the Events tab.
You will then see the various categories of flagged events...click on the Obstructive apnea choice...it will then take you to a list of all the obstructive apnea events and the time they happened. Click on one of those events...maybe choose one that has 2 events flagged fairly close together.
Your graphs on the right will then change to a zoomed in scale where each breath can be easily seen and you can also see the flattening of the flow rate line where the apnea event happened. They have to be 10 seconds or more duration. If you see some with single digit like 7 or 8 or 9...it's not seconds but instead some markers but it is real close to event duration and most likely those single digit events barely made the 10 second minimum.

So now you can see the flow rate....asleep breathing is nice and regular
like this


When we see asleep breathing with a real flagged event it looks like this. Note you go from nice and smooth to the event and then back to nice and smooth. Here's an example of mine. These are real.


When we have arousals our breathing changes and becomes much less smooth and regular. Sometimes the machine thinks this irregularity is some sort of apnea event. False positive if you want to think of it like that.

Here below you see very irregular breathing preceding the flagged event...and a bunch of other irregular breathing with more event flags.
What happened was an arousal from something caused the person to wake up either fully or partially (and may or may not even remember any awakening). In this example here we don't see anything related to breathing that might have caused the arousal.
Sometimes we might see a real flagged event (like mine above) and the irregular breathing happening right after the real event.
The apnea event causes the person to have an arousal...sometimes we will see central flags post arousal..they aren't real when the person isn't asleep.

And in the same example the arousal preceding the clustering of flagged events is obvious...and the breathing during the arousal and the clusters is not normal smooth asleep breathing. None of these flagged events are real. The person wasn't fully asleep when they got flagged.
They are what we call SWJ or Sleep/Wake/Junk. While they are included in the AHI since they aren't real we have to mentally remove them from the evaluations. If this were in a sleep lab they would simply be ignored and only the arousal would be noted.
Now here we don't know what caused the arousal.


So now you know what to look for. You can zoom in on each event and check the flow rate for asleep vs awake/semi awake pattern.
Sometimes it's fairly obvious like the examples above. Sometimes not so obvious and we have to sometimes make an educated guess.
It's not perfect evaluating things this way but it gets us in the ball park as to whether or not the bulk of the events are real or not.

[Julie]

.

[Pugsy]

over an hour of pressure pulses
that would keep me awake and disturb sleep if i ever got to sleep

It's not over an hour of pressure pulses.

It's an average of 1.15 pressure pulses per hour over the sleep session of roughly 7 hours..
Pressure pulses are teeny tiny brief puffs of air.
7 X 1.15 X a millisecond puff of air...maybe a second or two total time spent with the puffs of air over the entire night.

[TedVPAP]

Thanks for replies.
Max: I do have problems with leaking. I haven't tried any other masks but probably need to. I have an Amara View but haven't tried it yet - haven't had a night where I felt like I could be pretty wrecked the next day, just in case it doesn't work out. I'm not optimistic about it because I apparently have a narrow nose which makes it tricky for some. I've tried to adjust my straps to higher pressures, but still can't stop the leaking when the pressure rises.

Pugsy, I'm interested in looking at the flow rate, as you suggested, but have no idea what I need to do. Please let me know. Below is my data from a couple of nights ago - kind of typical for a minimum pressure of 8.



Cpapian: I don't know what pressure pulses are, but looking at my info, it looks like I get about 8-10 a night. Way less than the amount you had, so I'm thinking this number isn't a concern.

Chunkyfrog - I do have a mask liner. It's nice and has helped the comfort level enormously. As I mentioned to Max, I should probably try some other masks.

Thanks everyone!

Your poor sleep quality could be because of your high AHI, or arousals caused by leaking, or less likely reasons.

Your data shows that you are having a lot of apneas and hypoapneas. More pressure is needed to reduce these. The fact that the pressure is also going up significantly means that you need more pressure.
So it is clear that you need more pressure to improve your AHI.

Regarding leaking, your leak rate is not too bad at this point. It may get worse as you up the pressure. You may need to try other mask types.

[Grace~~~]

They are what we call SWJ or Sleep/Wake/Junk. While they are included in the AHI since they aren't real we have to mentally remove them from the evaluations. If this were in a sleep lab they would simply be ignored and only the arousal would be noted.
Now here we don't know what caused the arousal.

Hi Pugsy.
Loved studying and thinking about this post tonight.


Is RERA another name for arousal?

Once we can identify SWJ from actual obstructions how do we think of SWJ?
SWJ is obviously different from smooth regular sleep. Is it unhealthy sleep? Is it REM dreaming (healthy/ healing) sleep?

...but what you are saying is that it is NOT is oxygen deprivation or apnea.

Am I right or close on any of this?

[Pugsy]

Your data shows that you are having a lot of apneas and hypoapneas. More pressure is needed to reduce these. The fact that the pressure is also going up significantly means that you need more pressure.
So it is clear that you need more pressure to improve your AHI.

Probably needs more pressure but might be useful to take a look at those events just to make sure they are real and not SWJ before attempting more pressure. She's already tried to increase the minimum but her sleep quality went in the toilet worse than it is now.

If half that AHI is SWJ...maybe not nearly as critical to increase the pressure...the AHI isn't horribly horrible now.
As for the machine wanting to increase the pressure...it's mainly in one part of the night...I suspect she rolled over onto her back.
She may well need more pressure minimum on her back but if more pressure creates more problems than it fixes...maybe a compromise is in order.

If she hadn't already tried more minimum and had such a problem I would say go ahead but she has tried it and didn't have good results.
At this point I think maybe the prudent thing to do is put those events under the microscope and make sure they are real because if they aren't more pressure is unlikely to help and we already know that more pressure trashes sleep quality.
Why do something that really isn't needed when that something trashes sleep quality.

So that's why at this point with this person I think maybe take a step back and put this stuff under the microscope so we can have a better idea what is going on.
She's reporting multiple wake ups...which makes me have to consider SWJ being a significant factor in that AHI until proven otherwise.