edit: here are my latest screen shots, leaks r better!

elena88 wrote:I will bet those really arent central apneas at all, I bet that is just my lazy breathing! That is why the system one a flex kept sending pressure pulses at me, it all makes sense now! It would be impossible to have a central apnea while you are awake, so this is something different I bet.
Thank you so much dreamon!

Central apneas involve carbon dioxide dysregulation. The part of the brain that regulates breathing is disrupted and stops signaling the muscles that control breathing. As I mentioned earlier, there can be many causes. Your breathing pauses during the day may be the same thing. I suggest that you discuss this with your pulmonologist. Make sure she knows that it happens day and night too.

The S9 machine is sending the airway-testing pulses too. You just can't feel it the way you could on the PR System One.

* * *

It looks like your leaks were better last night, but you could still work on that. Were you using the Opus 360? With chin strap and/or mouth-taping? Are you using the proper size of nasal pillows? Were you able to stabilize the mask?

It's always best to examine trends for a while before switching things around. Results can vary from night to night, so don't base changes on just a few nights of results. It's good that you had NO obstructive apneas last night! I see no improvement in the centrals, however (Central AI was 1.9 each night).

My earlier suggestion regarding pressure was to use straight CPAP mode (not APAP) and set the pressure to either 9 or 10. See what the centrals look like there. If you're having obstructive apneas at that pressure, then start raising the pressure gradually until they're no longer a problem. If you're seeing less centrals at the lower pressure, then it can be assumed that they were probably being caused by the higher pressures. But your centrals may not be occurring due to the pressure at all. The only way to determine that is to try lower set pressure.

You had EPR set to 1.0 last night, during ramp only. You can keep it that way if you want, but I would set that to Off if you don't have a problem breathing against the pressure at 9 or 10.

If you want to continue using Autoset mode (instead of switching to CPAP), then perhaps you could try a pressure range of 9 - 13 for a few nights and see how that goes.

You'll get this all figured out, Elena. I know that it's frustrating not to sleep well. You're going to have to be very patient, and allow your body (and mind) to adjust to changes for at least a few nights (preferably a week) before considering other changes. Keep good records each day. Have faith that, one by one, you'll solve each problem. Your sleep time with mask on will gradually increase, and you'll be feeling better during the day.

I would be very interested to know what you more experienced forum members say about all this. I'm certainly not an expert around here. I'm just one person with very uncomplicated obstructive sleep apnea who reads a lot!

THANK YOU DREAM ON FOR ALL YOUR HELP!

good grief, what a lovely graph you made! thank you so much! Geez, youre awfully handy!

Well, it looks like I dont have ANY obstructive apneas anymore! I lowered my pressure, and still have none, so that is good.
I think I am beginning to get how this works, thank you ever so much for all the great help!

I hope everyone who has their data capable machines learns how to look at their graphs. NOW, I get it.. NOW, I understand why you all say they
are so important, and why you are "flying blind" without it. It amazes me that everyone went all these years not know what was happening to
them each night, no wonder so many people were frustrated and quit.. These information is priceless, especially for those who are struggling..
The duck to water folks, Im happy for you, but the rest of us.. oh what a wild ride!

I uploaded my summary so I can now see where my pressures have been for a long time, leaks too..
The ahi sure goes down the longer you wear your apap while you are awake..

Your AHI came down nicely, and your Central AI last night was half of what it was the other nights! So, you appear to be on the right path. Do you feel better today?

It remains to be seen if these improved numbers will be consistent. So, my suggestion (for what it is worth) is to keep all settings the way they are right now for at least a few days. Give your body (and mind) time to adjust to the changes. You may find yourself sleeping better and longer hours. Note how you feel during the day too. Work on those LEAKS because that may be making your pressure rise higher than it normally would. Your 95th Centile and Maximum leak rates were higher last night than the other two nights (not good). Try to figure out if leaks are coming from your mask or mouth -- or both. Check all tubing (including mask) for holes and your connections too. You want to see your Leak Rate less than 24 L/min. When you get the leak problem solved, you may see AHI come down on its own and overall pressure averages lower.

I do have suggestions for future adjustments (including straight CPAP), but let's see how things go over the next few days regarding the data trend and leaks. Then you can consider changing pressure settings again.

HI DREAMON! Hope you had a great night of sleep last night!
You are the graph maven!

viewtopic/t53955/KISS-quotKeep-it-simpl ... dquot.html

(edit to add link to kiss thread)

I just read on the K.I.S.S. thread above, that the s9 centrals the machine can be reading as LEAKS! so maybe I dont have ANY centrals at all, and I just
have leaks! Go check the thread out.. gee, that can be confusing to think you have centrals you dont.. so maybe my graphs are pretty close
to PERFECT!
I slept on my back last night to make sure my pillows would not dislodge, but I still had leaks, so maybe they are coming out of my nose. I taped
my mouth shut, but I had to put a tiny slit in the tape I was coughing up so much stuff before bed..
maybe I will try my fulllife face mask tonite ( I will change the settings for that in the s9)
Here is my graph and stats, and looks like they are excellent! Thanks for all your graph/map making! Were you a cartographer in another life?

I just read on the K.I.S.S. thread, that the s9 centrals the machine can be reading as LEAKS! so maybe I dont have ANY centrals at all, and I just
have leaks!

I read the thread you referred to. I'm not convinced that the machine is misinterpreting the centrals in your case, particularly because you had four central apneas recorded at the sleep lab during the one hour of sleep you had there. And you have reactive airway disease and problems with long breathing pauses during the day.

Hard to say what's causing your central apneas at this point. In your case, the leaks may be driving up your pressure, which in turn could be causing pressure-induced central apneas. But it's impossible to say at this point. The centrals may be due to your poor quality sleep (frequent arousals). Or the centrals may be related to your daytime problem where your breathing pauses for too long. Or something else.

In my own case, I usually have a perfectly flat leak line -- zero leaks. My central apneas are not caused by leaks. And I don't think the machine is misinterpreting them, in my case anyway. I have occasionally sensed my too-long breathing pauses (centrals) while in bed, in a barely awake state.

Your leaks are still muddling things too much. I suggest you continue to work on that, to see if solving that problem will improve the other results numbers. Then we can go from there regarding suggested pressure changes. That's my suggestion anyway. Perhaps others here have different thoughts?

aha, I knew it! A cartographer!

I always think of that scene in Close Encounters where they roll the giant globe down the hallway!

oh good point, if you have no leaks, they cant be causing centrals..

Okay, Im just going to work on the LEAK PROJECT for the rest of the week..

Im sorry you got such a rotten night sleep, and you had such a steller one the night before.. darn... hope you repeat the
night before's performance!
love the graph, you are just so ingenious with all this stuff!

I edited my last post multiple times. I couldn't get the words right! You may want to re-read it to see what I added/changed. Sorry about that....

Yeah, I just wish my sleep was more consistent. I think a lot of us have that problem. I suppose everyone does to one degree or another -- sleep apnea or not. But things sure are A LOT better for me on CPAP than without it, that's for sure!

Well, let us know your results. If you want, I'll update your chart daily, for a while anyway. I think it makes it easier to see any trends, and makes it clearer what pressure settings may work best for you. It appears that the leaks are from your nasal pillows/mask cushion, mouth, or both. It'll be a process of elimination, but I think you'll figure it out.

Hi Dreamon,
I can only hope you had a better nights rest last night!
Gosh, you are right, consistancy is the goal!

Speaking of consistancy, this will be a different sort of graph today! One where I NEVER SLEPT ONE WINK! Its interesting to see what happens
when the machine reads things while you are awake! This is the couple hours I tried to go to sleep with my fulllife face mask, what a disaster!
I did change the settings on the machine for ffm, and kept everything the same... I wont be trying this anytime soon, I hate that friggen thing!
BAck to the nose pillows tonite.





Okay, mind you I was not asleep for ONE second during this time.. so here is how it goes.

A: I get up for a walk about, as there are two love sick owls outside my window screeching and hooting..
B: The dog starts barking at the coyotes, go outside, bang a pan, bring the dog in.
C. Me getting up and deciding I need to customize this mask to fit me better so out come the scissors, and I trim it then go back to bed, still trying!
D. machine reads a 14 second central while Im just laying there watching tv, must have been watching the discovery channel!
E. machine reads obstructive apnea.. probably me clearning my throat?
F. machine reads another central, oh maybe its not the discovery channel, its HBO real sex!
G. snore index reads not a snore, but me coughing, I KNOW cuz i looked at the clock.
H. snore index reads not another snore, but me growling, and snorting, them come the expletives,
right before I rip my mask off and launch it across the room.
Back to the nose pillows for me.

Well, I'm not even going to update the daily progress chart because that data's pretty useless!

So, those large leaks were coming from the FullLife mask's seal, I presume (since your mouth was covered by the mask)? If you were indeed awake, then you should've noticed quite a bit of noise from the seal leaking.

Hopefully, you can get some good sleep with the nasal pillows mask this weekend. Try to get the leak problem solved. At least figure out if the leaks are coming from displacement of the nasal pillows or through open mouth. Then it'll be clearer what to try next.

Well, I'm not even going to update the daily progress chart because that data's pretty useless!

No kidding! but I tried! and I tried.... (humming cant get no satisfaction by the stones)

Yes, there were some doozie leaks when I would try to adjust the mask..

on a side note, I feel fabulous! I slept seven hours straight with my face in the pillows and no mask. I havent felt this good IN MONTHS!

I cant believe how much energy I have! Im absolutely spastic with energy, IM so happy~! woo hoo!!!!

elena88 wrote:No kidding! but I tried! and I tried.... (humming cant get no satisfaction by the stones)

Yes, there were some doozie leaks when I would try to adjust the mask..

on a side note, I feel fabulous! I slept seven hours straight with my face in the pillows and no mask. I havent felt this good IN MONTHS!

I cant believe how much energy I have! Im absolutely spastic with energy, IM so happy~! woo hoo!!!!

Well....I can certainly understand that you would feel good after getting 7 hours of sleep without the mask, but I'm sure you were having apneas during that period of time, and those fluctuating oxygen levels can't be good for your body! The more time you spend sleeping without the mask, the more you're delaying adjustment to the mask. But I know that you know that.

It's obvious that you're having too many large leaks, but I don't know what's causing that. Only you can figure that out -- by process of elimination. I know that you've already tried a lot of different masks. When you figure out where the leaks are coming from (mask or mouth?), then maybe you can consider another mask based on those results.

I think you have so many different things that may be disrupting your sleep (thyroid level not quite right yet, possibly breathing irregularities, leaks, maybe some anxiety and/or insomnia) that it's a bit of a puzzle. I know that you've been severely sleep-deprived lately, and that sure makes things difficult. It can be challenging to regain your sleep rhythm once it's disrupted too. The bottom line is you need to get to the point where you're wearing the mask all night long. I'm hoping that getting the leaks solved and pressure adjusted is going to make that easier. But it isn't a race; this is a long-haul kinda thing. One by one, you will get it figured out, I'm sure. Try not to pressure yourself too much regarding sleep and CPAP....to the extent that's possible.

If you get more useful data in the coming days I will update your progress chart.

You STILL haven't tried straight pressure (CPAP mode).......even though it's been previously suggested by DreamOn (twice) and me (in my first post).
I don't know what your reluctance is to trying it. It WOULD eliminate one or more of the possible "usual suspects".


Den

thank you dreamon for all the wonderful tips and suggestions, as usual you are one of the yoda's of apnea!

wulfman, I havent tried straight cpap yet because I was waiting to find a pattern in the apap and Im going to see my doctor in a few days,
and didnt want to have her asking me why on earth I wanted an apap when I switched to cpap.. so I was waiting to get that visit over
with before I tried it.

elena88 wrote:thank you dreamon for all the wonderful tips and suggestions, as usual you are one of the yoda's of apnea!

wulfman, I havent tried straight cpap yet because I was waiting to find a pattern in the apap and Im going to see my doctor in a few days,
and didnt want to have her asking me why on earth I wanted an apap when I switched to cpap.. so I was waiting to get that visit over
with before I tried it.

I saw the "pattern" in the first set of reports you posted on the first page.......hence, my pressure recommendation.

The justification to having an APAP SHOULD BE that you have more options. Don't forget, this is YOUR therapy. YOU'RE going to be sleeping with YOUR machine for (presumably) a long time. If YOU find a better setting than the one they initially prescribed BECAUSE YOU have those additional options, then, that proves to them that YOU'RE being proactive with YOUR therapy. If they can't deal with that, then you should find a different doctor.

Side note: I don't know how this is going to tie in with you sleeping without the machine last night and feeling better today, but IF you're going to be using this therapy, you have my recommendations as a "starting" point.


Den

I have a great doctor, and I have already changed the pressure settings, so realistically, changing it from apap to cpap is not a big deal,
I think it was just in my head that it was.

I asked for the apap, she said most of all her patients preferred cpaps, but Im not sure how much they would know if it was their first machine.

thanks for all your help, I really appreciate everyone's advice, and Im still a bit new at this.

if I hit the lotto, and have one hundred percent positional apnea, that would be great, but if not, I will keep trying to make this work..

Its nice to see so many people here who have worked out their kinks and feel so good on cpaps.




Hey, Dreamon, have a good night tonight!