mask leaks

Bennnyp wrote:How could they have missed the mark by so
much. Was it the person who did my sleep study or the doctor or the dme?

I don't know. We don't sleep the same each night is one maybe.
Maybe the tech came up with a worse case scenario...maybe the doctor likes a cushion of pressure.
You know we just don't know and while curious...stuff happens and not much we can do about it.
When you have time read up on the posts from old dude....He had leaks that he simply couldn't manage and really high pressures were suggested so in desperation he reduced the pressure just to get leaks under control and low and behold...he got the leaks under control and his pressure needs are about half of what he started with and AHI is most often less than one or around that number.
I am still scratching my head trying to figure out how they missed his by so much.
There's a woman...forget her name..same thing...so you aren't alone in that regard.

Where we are having a problem we you is that the pressure reductions haven't fixed the leaks as much as we would like.

http://s743.photobucket.com/user/Bennny ... b.jpg.html
http://s743.photobucket.com/user/Bennny ... 8.jpg.html

Here is the last 2 nights. Big diference between both nights. I feel better today than I did yesterday Hmmm? I woke up last night the second time and
felt like i couldn't breathe. Went back to bed a little while later and everything was fine. I woke up the third time and stayed up a little while and then
went back to bed. I thought i slept really well, but when i looked at the numbers i see a ton of centrals. Do i need to tweak pressures or ps? It seems
that after 6 hours of sleep is when i get most of my centrals.

Check your clock and calendar on the S9.
Your ugly report is showing that you went to bed around 11:30 PM on Feb 18..that's today.

Last night??? Beats me what happened. You should feel like crap according to the report.
I wouldn't change anything yet. 2 nights doesn't establish any sort of trend.
We don't know which one was the fluke and one of them was for sure a fluke.

http://s743.photobucket.com/user/Bennny ... 7.jpg.html

The first 7 hours of the night was wearing a nasal mask. The next couple of hours were a full face mask. Almost all centrals.

Did you sleep soundly the 2 hours with the full face mask?
Or was it fractured sleep, tossing and turning?

The Central cluster right before the 3 AM wake up...most like awake/semi awake stuff.
Don't know what to make of the 2 hours with the FFmask unless you just didn't get good sleep.

Your leaks with the nasal mask are improving...not nearly as many so far above 24 L/min...Looks like most of the night was below 30 L/min (roughly eyeballing it) with a good bit of time below 20 L/min.
It appears your mouth is starting to stay closed more and when it is opening, it isn't opening so much. That's good.
Some people can learn to keep the mouth shut for the most part. Might not always be perfect but good enough.

Refresh my memory...are you sure the RX from the sleep doctor after titration study was 16/24? Have you seen it in writing? Who told you that was your settings?
That's a PS of 8...which is a big Pressure support.
You never really tried it though did you? If I remember right the machine was set at 16 with PS of 0 pretty much making it function like an APAP. You weren't getting 2 distinct pressures.
You rarely come close to the 18 IPAP max now...I can't see where they came up with 24 IPAP.

Your calendar on your S9 is still a day ahead.

I think i slept soundly pretty soundly with the full face mask. I switched to the full face mask because lately my sinus's have been congested.
my original settings were 16/24 and PS=0 I have not seen the sleep study. I did ask my dme about the settings. She really didn't say to much
as i was questioning her if it was set up correctly. I haven't seen my doctor since my sleep study. He told me someone would call me after
the sleep study and get me going. No contact with him since. He has been on holiday for the last 2 months. Should i call to get a copy of the
sleep study.

By all means...get copies of the sleep studies..especially that titration part.

Don't rely on the doctor to call you...his staff is who actually would do it and they don't always follow up like they should.
You need to schedule the appointment and I wouldn't put it off.
If you think you slept well with the full face mask with all those centrals...something is going on and I think the doctor needs to be in the loop.

I just called the doctor and set up an appontment for monday. I asked if i could have a copy of my sleep study. She is going to print it out
for me. I am going to pick it up right now. I also said i would bring in my sd card for the appointment. She called me back and said that
i would need to go to the dme and they would print it out for me. What should i have them print for me. I can actually do it myself.
I also am going to see a different doctor on monday. With all of those centrals with the ffm from what i have read wouldn't i want to lower
me epap. I'm totally confused. ecspeccially when my settings are 16 and 24 with no ps. Any info i can get ahead of time would be great.
That way when i see the doctor hopefully i can ask the right questions. This seems kinda crazy to me. Definately need to rethink the
whole medical system. I will not give up. Gonna get this figured out.

You will need ResScan reports...not SleepyHead. The doctor won't have a clue what SleepHead is showing.
You will want the detailed pages an not just summary. In other words the nightly detailed graphs.
You will want maybe 3 or 4 recent detailed reports
and 3 or 4 reports from when you started therapy at the original settings on the machine...to show just how bad things were and the fact that the machine wouldn't function as bilevel machine at those settings.
Plus you will need summary stuff.

If you have Complex Sleep Apnea...that's where you didn't have centrals in the first sleep study but now have excess centrals with the introduction of cpap pressure...then yes, sometimes reduction in pressure is something that will fix the issue.
We don't know if
1...you didn't have any centrals in the diagnostic sleep study
2...you did or didn't have any centrals develop in the titration study
and that's why we want the reports.

IF you have CompSA going on here..sometimes reducing the pressure allows for the centrals not to occur...sometimes there's a fine line where below so and so pressure the centrals aren't so problematic...but we also cannot forget the obstructive events while we are worrying about centrals. The obstructive events still need to be dealt with and sometimes they need more pressure that goes above the fine line where we don't have centrals pop up.

I haven't had the CompSA discussion with you yet because until you had the leaks under control we simply can't know for sure if the centrals are real or not just from the machine's sensing perspective...not to mention the chance for them to be sleep onset centrals or just Sleep/Wake/Junk.
Worrying about CompSA was pointless until the leaks were better managed.
While 30 L/min is not ideal...it's far better than where you were at when we started this discussion and I suspect that for the most part the data shown is fairly accurate since we don't see a ton of green apneas which means "unknown' because the machine couldn't tell what they were.

It's really odd that your centrals seemed to materialize in excess numbers with the full face mask. I have to explanation for that since you say you feel like you slept well.

I don't know if you have CompSA at this point...your results aren't consistent enough to be certain.
It is a concern though and that's why I have tried to come up with pressures that take care of the obstructives and not trigger the centrals....and do all this in face of questionable data because of massive leaks.

I have suspected all along that you would need to have an in depth discussion about all this with your doctor but I knew that until leaks were managed better that he wouldn't be able to offer anything concrete.
That's why I have been such a nag about leaks.

Don't know if this is what you have going on here but just in case...this is a good video on CompSA
https://www.youtube.com/watch?v=CU-XTcf ... e=youtu.be

http://s743.photobucket.com/user/Bennny ... 3.jpg.html

Here we go again. I'm cautiously optimistic. Numbers are not to bad. I set machine back to rx settings. I still am trying to figure out how the ps
went from 4 to 0. Dme didn't do it. I didn't do it. I noticed around the middle of jan i was feeling worse and getting headaches all the time. It got
switched on jan 5th. Could that have made my therapy worse and give me headaches? Doesn't matter i just want to move forward and get good
therapy. But still curious, I am that way. Thoughts please.

2 AM to 4 AM is ugly...I see breaks in therapy.
Have trouble sleeping?

Yes, back when the aliens (since you or the DME didn't do it) changed the PS to 0 the additional events that you had, likely caused more oxygen drops and the desats can cause headaches. Very likely that's the reason. Your therapy was already not so great due to leaks and the change in settings made things worse.
These settings aren't really any better than the other slightly lower settings.
Maybe they work better with a full face mask.

Last night I slept with a nasal mask. It is much more comfortable than a ffm. I think I will sleep with it again tonight
and try to get a few nights in with it. At least my leaks are lower with the nasal mask. My tritation said that it was
best at 22/18. Any thoughts?

I think you should just try to get some good sleep.
Your leaks are improved on the nasal mask.
Settings??? I don't see a couple of cm one way or the other making or breaking it.
You did very well the other night with the slightly lower settings. It's easier to control leaks with a little less pressure.

It's not like with the slightly higher pressures your AHI went to 1.0

This is what I would do if it were me and I was going to be seeing the doctor next week and he was going to realize that I had been messing with the pressures.

I would go with several reports showing the various settings including original RX setting.
I would explain that I was at my wits end trying to get the leaks under control because "as I understand all this...my leaks were so bad the machine couldn't do a good job" "so I lowered pressures just to try to get leaks better controlled and then was going to work up from there as needed"
"I seem to get a lot of what the machine calls "centrals" sometimes...especially when I use a full face mask" "I think I am sleeping well when all those machine flagged centrals are showing up".

Do like I did...own up to doing a lot of reading on the internet. if anything is said. Any doctor that rejects a patient wanting to learn about his condition and therapy...is a pretty sorry excuse for a doctor with a serious God complex and I would fire them right quick. Even in the titration report dictation he says it was a sub optimal titration study due to lack of sleep.

So I think for a couple of nights..no more experimenting and changing things.
You did well with those other settings lower EPAP (was it 14?) and max IPAP was it 18 or 19 or 20...well it didn't want to go much above 18 except for maybe once...so I don't think it really is all that critical one way or the other what you set Max IPAP at. I don't think it is going to go up to 20 except very rarely.
So I would use what felt good...what I maybe slept the best with and to heck with it.
We have done so many changes (too many in all honesty) that it's hard for me to remember which worked best.
We never really gave any setting adequate time for much evaluation.

Your titration study had no mention of a problem with centrals and reported AHI 2.3...so even if they were all centrals...that doesn't win the CompSA diagnosis...so I don't know what to make of the centrals. With the titration using pressures of 24/18...I would think if the centrals were pressure related they should have made an appearance at that time.

So just concentrate on doing what you need to do to minimize leaks (they are still too big too often...though improving) and sleep good. Use the mask that you sleep better with. Use the settings you used the other night and got a decent report with.