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

Well....the good news is that you slept more soundly, and for more hours!!! The bad news is that your AHI was up, and your leaks were way too high.

REGARDING LEAKS.... I don't know whether your leaks are coming from the nasal pillows or from your mouth. I suspect both, but with such a high leak rate, you may be doing some significant mouth-breathing/leaking once you're asleep. Is your mouth dry in the morning? You're losing that good therapy air from somewhere, which means that it's not there to keep your airway open. I'm also wondering if you've checked your hoses (main and mask) and connections for holes. The reason I ask is that your leak rate is beginning above zero when you turn the machine on (see the Leaks chart). Also, is the Mask setting on your machine set to "pillows," since you're using the Opus 360 mask?

No, I don't think that your central apneas are caused directly by leaks, although it is possible that leaks are pushing your pressure up, which in turn may cause centrals in some people (due to higher pressure). It's difficult to say. Your centrals could be due to any number of things -- pressure, arousals/frequent awakenings, sleep stage changes, and/or medical issues (usually lung, heart, central nervous system disorder). I'm not aware of any medication you're taking that I suspect would be causing them, which is a factor for some people with centrals.

I'm not sure why you had so much difficulty when you tried CPAP at 10 night before last. Maybe it was just a bad night, when you were especially sensitive? Look at the Pressure graph on last night's chart, when you were using APAP set at 5-14. Your pressure immediately goes up to around 10, and hovers around there (moving up and down a few cmH2O) throughout the night anyway. Note that your Leak Rate was better when you were using set CPAP pressure also. Your AHI and centrals were much better at CPAP 10 than they were last night at APAP 5-14.

You only tried CPAP at 10 for one night, and only slept about one hour total that night, so conclusions can't be reached about what a full night of sleep would look like at CPAP 10 over a longer period of time. I'd like to see you return to CPAP 10 for a week or so, to see what the trend is at that pressure. If you really MUST use it, you could set Ramp to start at pressure of 5 and have it run for a short period. Hopefully, you'd be asleep by the time it got to the set pressure of 10. But just be aware, as Kathy (kteague) cautioned, that when you're using Ramp you may be unprotected from obstructive apneas until it gets up to full pressure. That's why it's better not to set it for too long or re-start Ramp throughout the night. It really is better to let your body become accustomed to the full pressure if you can. Like I said, you're already at pressure of 10 (and above) most of the night when you're using APAP anyway.

The choice is yours, of course. I'm just another person with sleep apnea, and not a medical professional or expert by any means.

Sleep well.

I haven't been sleeping very soundly lately. I'm working on it, though.... I'm switching back to CPAP tonight. (I had been experimenting with APAP for a while.)

Elena, what exactly is bothering you about pressure at 10? Is it that exhaling is difficult? I'd like to see you give CPAP at 10 a fair shot for several nights, but if you absolutely cannot tolerate it you could try CPAP at 10 with EPR set to Fulltime at 1 or 2. That would give you exhale relief all night. If CPAP pressure is 10 and EPR at 2, then you're exhaling at 8.

The problem with EPR is that some people have obstructive apneas on exhale, or during the inhale/exhale transition. If you are one of those people, then the lower exhale pressure of EPR may leave you unprotected from some obstructive apneas. That may not be a big consideration in your case, since almost ALL of your apneas are centrals. So, if you must, you could try CPAP pressure of 10, with EPR fulltime at 1 to start, and if that doesn't give you enough exhale relief then you could try EPR at 2. Then we could see what your results are over a few days at those settings, and adjust accordingly. You may have to bump your CPAP pressure up further at that point, but let's see how it looks.

Yes, definitely check the main hose for leaks -- and all connections. Don't forget to check the small mask tubing also. It's odd that the leak rate didn't start at zero last night.

Another thing is that you may need new nasal pillows. Sometimes they only last a few months before needing replacement. If you suspect that the ones you're using may not be the right size (too small maybe?) then you may want to have your DME refit you for the proper size. I usually wear the snuggest fitting (largest) nasal pillows possible. Don't forget to try a tiny dab of Lansinoh lanolin on the outside of your nares too. It really can help to seal the pillows in place.

Like I've said before, it could be that the Opus 360 isn't going to be your best mask. You should not be getting massive leaks like that! My Leak Line is absolutely flat (zero leaks) with the Opus 360 and several other masks. (Granted, I do use the PAPCap chin strap with all my nasal and nasal pillows masks; without that, I mouth leak.) If you have the opportunity to try some other masks, that would be good. I know that you've already tried quite a few, but.... I have tried on at least 15 different masks, most of those in various sizes, and there are only about 3 or 4 that work for me. It sure is a hassle, but it can make a big difference when you find "the right one."

I hope you have a restful night's sleep tonight!

Hi Dreamon!
Im sorry to hear you have not been sleeping very soundly, have you been charting your apap experiments too?
so cpap tonite, I will try too! We can compare notes!
Im going to put my mask on now and see why ten is so hard while Im awake...
Okay, back from my experiment.. The pressure going IN really bothers me, and then its on me again before I finish exhaling, so it blows me
up like a balloon, I cant keep up with it. My exhales are short and weak, so I wait awhile just to stop the pressure from coming back in, that
might be the problem. I tried EPR at one, that wasnt enough, two was a little better, but I was still struggling, and three was better, although
I was still not done exhaling when it was on me again. If I exhaled longer and smoother and stronger, I can see how it would work. I have put
this on my husband and watched him, and he could exhale against it with long strong breaths..
Im going to try ten tonight, try two epr, if I fail, I will go three, its better than nothing I guess.. I know I sleep THROUGH this pressure, but
it probably isnt the most relaxing sleep I could be getting, maybe that is why Im so tired when I wake up. Sometimes I feel like I did battle all
night, Im just a worn out rag.
Im looking for leaks, I will check them in bathtub tonite.. little hose too, and I have some fresh nose pillows I can put on too..
thanks for all your great advice and tips, and I hope you have some very sweet dreams on straight cpap tonite!
I aspire to your flat line leak rate!

elena88 wrote:....have you been charting your apap experiments too?

Oh, yes! As you can probably imagine, I have charts and charts galore! I've charted everything since the first day I started CPAP.

My exhales are short and weak, so I wait awhile just to stop the pressure from coming back in, that might be the problem.

I guess I've "trained" myself now and become acclimated to the pressure, as I don't notice that so much anymore. I started out with EPR at 1 and 2, but decided over time that it was more comfortable for me to breathe without EPR. I don't care for the way it responds to my particular breathing pattern. Remember, you are setting the breathing pace, not the machine. It isn't breathing for you. Just try to relax and breathe as you normally would. I know, easier said than done...but the more you do it, the more your body becomes accustomed to it.

Im going to try ten tonight, try two epr, if I fail, I will go three, its better than nothing I guess..

Let us know how that goes. If you're getting a lot of obstructive apneas with CPAP at 10 and EPR at 2 or 3, you may have to raise your pressure. TRY to stick with it all night, for multiple nights. That's the only way you're going to know how it's working. You need to give your body the opportunity to adapt to each change, and that takes time.

Im looking for leaks, I will check them in bathtub tonite.. little hose too, and I have some fresh nose pillows I can put on too..

Good! It just boggles my mind that you could be leaking that much air from your nasal pillows. You have some pretty massive leaks throughout the night!

Hi Dreamon!
Oh you little chart maven you! Would you like to share some of your charts! OMG, that flat leak line is almost impossible for me
to believe! Incredible!

Im happy to hear you have trained yourself to breath against the machine, Im still working on it, almost six months now..

Well, last night was pretty much a disaster. I tried to set the machine to cpap 10 with a ramp, and epr at 2 and no matter what the machine would not
ramp.. I tried different pressures, I spent a long time futzing with it, and no luck. That first part of the graph, I spent pressing buttons on the machine
I was not sleeping, as you can see there is no leak line, and one central for 12 seconds, Im wide awake, I got so frustrated I took off the mask.. then I put it back on and tried apap.. I still could not get the ramp to work so I could narrow the pressure range , so I was forced to put it back to five.. Then the headgear wasnt fitting right, and myheadband thing wasnt working, and I kept adjusting it.. all the spike leaks are me adjusting the mask..
Then the machine started making a high pitch double tone which drove me nuts, the sound even came up the tube into my pillows and in my head!
I was about to just take it all off and write off the whole light, but I kept it on.. The tone stopped in the morning.. I was about to toss the entire
contraption out the window last night.. Im so tired, just from all the frustrations.
Im beginning to wonder if most of those centrals are picked up while Im awake.
I sure wish I could have done the cpap with a ramp last night.. maybe if I turn the auto off feature on the machine, it will reset and give me a ramp
everytime I turn it off.. I have it on manual off on now. GEEZ, it was frustrating!
Im going to buy a new mask.
Anyway, I hope you had a great night last night, Dreamon, and another flat leak line! Youre amazing ms. cartographer!

Elena
Don't get discoraged my AHI was 5.5 last night. leaks were ok only one bad time around 5am or so. The point being we all fight our little battles its just about being persistant and working at it. it will get better. hangin there and keep working at it no matter how frrustrated we become.

Chris

KC5cychris wrote:Elena
Don't get discoraged my AHI was 5.5 last night. leaks were ok only one bad time around 5am or so. The point being we all fight our little battles its just about being persistant and working at it. it will get better. hangin there and keep working at it no matter how frrustrated we become.

Chris

Hi Chris,
Thanks for the encouragement.. I have ahi's around five or six many times before, and I dont notice a difference if my ahi if less than one or
more than five in the morning.. what I do notice is the frustrations of not sleeping well, so your point is well taken. I have seen posts by people
who come here after a year of trying and finally make it work.. so I know it is possible.. and I will try to get past the frustration of feeling
much worse throughout the day on cpap then not..
thanks so much!

elena

Hi Elena,

I also had trouble synchnonizing my breathing with my previous auto CPAP machine. It wanted to delivery air before I wanted to receive - very uncomfortable. I struggled with this for waaay too long. I borrowed a friends Bipap machine and the breathing experience was much,much better. I recently got my own Bipap, called a auto VPAP 25 machine by Resmed, and I'm doing much better because the machine can be programmed to synchronize with your breathing pattern. I'm attaching specific information from the user manual how this breathing synchronization works. In my experience the breathing experience is completely different -- much calmer.

I do not know if your S9 machine has this capability or not. From all reports the S9 is an excellent machine so by no means am I saying you cannot achieve excellent results with your machine. I can only relay what happened in my In my personal situation. I tried for 2 years with my auto CPAP. By the grace of God I got to test out a bipap machine and that's how I figured this out for me. My sleep Dr. never considered Bipap for me. They cost more money blah, blah, blah. I'm more of a teacher to my Dr than vice-versa. I would be pushing up roses if I listened to my sleep Dr.

In the end, my settings on Bipap (VPAP) are about the same as I had on auto cpap but I sleep more soundly because of the machines capability to breath with me. You may want to consider at least test driving a bipap at some point once you have exhausted all possibilities with your S9.


http://i968.photobucket.com/albums/ae16 ... reath2.jpg

Thomas F. wrote:Hi Elena,

I also had trouble synchnonizing my breathing with my previous auto CPAP machine. It wanted to delivery air before I wanted to receive - very uncomfortable. I struggled with this for waaay too long. I borrowed a friends Bipap machine and the breathing experience was much,much better. I recently got my own Bipap, called a auto VPAP 25 machine by Resmed, and I'm doing much better because the machine can be programmed to synchronize with your breathing pattern. I'm attaching specific information from the user manual how this breathing synchronization works. In my experience the breathing experience is completely different -- much calmer.

I do not know if your S9 machine has this capability or not. From all reports the S9 is an excellent machine so by no means am I saying you cannot achieve excellent results with your machine. I can only relay what happened in my In my personal situation. I tried for 2 years with my auto CPAP. By the grace of God I got to test out a bipap machine and that's how I figured this out for me. My sleep Dr. never considered Bipap for me. They cost more money blah, blah, blah. I'm more of a teacher to my Dr than vice-versa. I would be pushing up roses if I listened to my sleep Dr.

In the end, my settings on Bipap (VPAP) are about the same as I had on auto cpap but I sleep more soundly because of the machines capability to breath with me. You may want to consider at least test driving a bipap at some point once you have exhausted all possibilities with your S9.


http://i968.photobucket.com/albums/ae16 ... reath2.jpg

Oh my goodness, thank you for sharing this information with me! I keep thinking, if I could program the s nine to take twice as long to start the pressure
and let me finish my exhale, I would be a happy camper! I can manange at lower pressures, and I survive at higher pressures while Im sleeping, but
IM SO Disturbed.. I even just refuse to take a breath to keep the thing off me for a few more seconds.. so I can get my air out..
Otherwise, I just blow up like a balloon.. and I think that is happening while Im sleeping sometimes, not a relaxing experience sleeping..
The epr is wonderful in that it reduces the pressure, but I still feel like it expects me to take a breath way before Im ready..

I thought the bipaps were for only people who needed high pressures? I dont have a high pressure, I just need twice the time to exhale..
This s9 is the cats meow, but it sure wont give me twice the time to exhale. Maybe I should ask my sleep doctor about that?
Sorry you didnt have a better one, and you were the teacher.. but good for you for being so proactive.. My goodness, I wonder if bipap would help?
I just bought this darn s nine and paid for it myself.. but, Im really getting frustrated, maybe i could rent a bipap???

Anyway, THANK YOU SO MUCH FOR WRITING ABOUT THIS.. it would never in a million years occurred to me because I dont have a high pressure!
Thank you so much for the link too.. this in such valuable information!

I'm sorry that you're having such a difficult time with all this, Elena.

You tried so many different settings in one night that it's too difficult to get much useful information from the data, so I'm not going to update the chart with last night's data.

When you had the machine set at CPAP, pressure of 10, EPR of 2, what was the "Start Pressure" setting on the machine? (That is the pressure that Ramp starts at.) Also, are you absolutely certain that Max Ramp wasn't set to "Off"? Choices there are Off or 5-minute increments up to 45 minutes. The answers to those two questions may give some clues as to why Ramp wasn't working.

I don't know what else to suggest, other than what I (and others) have been saying: (1) fix the leak problem and (2) try CPAP at 10 for a while. The fixed CPAP pressure may help with the leak problem, by the way, as pressure wouldn't be going as high as it does on APAP and also wouldn't be changing throughout the night. Using a fixed CPAP pressure may help to clarify the cause of your central apneas too.

Perhaps when your sleep doctor sees your ResScan printouts and the progress chart she will have some helpful suggestions or other options for you. Make sure she knows just how much difficulty you're having with CPAP compliance and sleep, and discuss your daytime breathing pattern with her also. I suggest that you also ask if your thyroid situation may be contributing to your difficulties with sleep in general.

DreamOn wrote:I'm sorry that you're having such a difficult time with all this, Elena.

You tried so many different settings in one night that it's too difficult to get much useful information from the data, so I'm not going to update the chart with last night's data.

When you had the machine set at CPAP, pressure of 10, EPR of 2, what was the "Start Pressure" setting on the machine? (That is the pressure that Ramp starts at.) Also, are you absolutely certain that Max Ramp wasn't set to "Off"? Choices there are Off or 5-minute increments up to 45 minutes. The answers to those two questions may give some clues as to why Ramp wasn't working.

I don't know what else to suggest, other than what I (and others) have been saying: (1) fix the leak problem and (2) try CPAP at 10 for a while. The fixed CPAP pressure may help with the leak problem, by the way, as pressure wouldn't be going as high as it does on APAP and also wouldn't be changing throughout the night. Using a fixed CPAP pressure may help to clarify the cause of your central apneas too.

Perhaps when your sleep doctor sees your ResScan printouts and the progress chart she will have some helpful suggestions or other options for you. Make sure she knows just how much difficulty you're having with CPAP compliance and sleep, and discuss your daytime breathing pattern with her also. I suggest that you also ask if your thyroid situation may be contributing to your difficulties with sleep in general.

Hi Dreamon,
how was your night last night?

Yes, there was a heck of a lot going on, and none of it was good.. I had the start pressure as five, had the ramp at forty five etc.. I almost took a photo
of it, because it was all set, I did it at all different pressures, and it wouldnt stick.. It seems like it works the first time, then after you turn it off once,
it goes right to the top pressure. I think maybe if I put the auto on/off on tonite, that will help.
Im going to talk to my doctor about the trouble Im having, and about my extended exhale times during the day and at night on the machine.
A bipap was suggested above and that really got me excited, but I guess I have to exhaust all the other alternatives first.
If a bipap can bypass the R.A.D. problem, that would be a dream come true!

I am utterly amazed that so many people can breath against cpap pressure, it boggles my mind! But if you guys can do it, I should be able to do it too,
right? Thanks for all your wonderful tips, as usual you are spot on! Have a great day, and sweet dreams tonight!

I know that the Ramp "Start Pressure" has to be less than the lowest machine pressure, so I thought that may have been the problem, but that doesn't seem to be the case. I don't know why Ramp wasn't working for you. I used Ramp for only a few weeks at the beginning, so I don't have a lot of experience with that.

Just a few more thoughts....
Perhaps you should set the machine up during the day with all the proper settings and experiment with it, when you're not tired and feeling pressured to sleep at night. I sometimes read with the mask on before going to sleep. You might try reading with the machine on during the day. Or knit, if you enjoy doing that kind of thing. Or sit and watch TV in the evening while using the machine. You may feel a little silly at first, but just explain to your husband that you think it will help you acclimate to the machine, so you can sleep better at night. You need to associate the mask and machine with relaxation, with no pressure to "perform" (sleep). You are fighting it right now. You need to change that adversarial way of thinking. It's there to help you.

I hope you sleep better tonight....

Hi Elena, as I was reading these last posts I wanted to share two things with you, and DreamOn already mentioned both. First, *even if* you are a shallow breather and *even if* you are having trouble breathing out against 10cm with no EPR, please give it a go anyway. When I first started on 10.5cm it WAS difficult, and for a while I felt like I was blowing up and having difficulty too... however this can actually work for you, as over time (I suspect) your lungs get stronger and are able to handle the pressure. I have no problem breathing out against 10.5cm now, I hardly even notice it. So I think perhaps you are getting frustrated and think that you cannot handle it. It is not necessarily easy at first, but even after a few days of continuous practice you WILL be able to breath out against that pressure. As dreamon correctly notes, you are ALREADY at that pressure when you're asleep!

Second, in order to train both your brain and your respiratory system, DO use the cpap at 10 cm during the day, while you're relaxed and without the psychological pressure of having to go to sleep. You may even be able to troubleshoot some leak issues this way.

And if all of this does fail, then bipap in indeed a possibility. But I would first give myself the chance to get acclimated to 10cm while you are awake, if I were you. You may be pleasantly surprised at how easy it becomes after a short while.

good luck!

DreamOn wrote:I know that the Ramp "Start Pressure" has to be less than the lowest machine pressure, so I thought that may have been the problem, but that doesn't seem to be the case. I don't know why Ramp wasn't working for you. I used Ramp for only a few weeks at the beginning, so I don't have a lot of experience with that.

Just a few more thoughts....
Perhaps you should set the machine up during the day with all the proper settings and experiment with it, when you're not tired and feeling pressured to sleep at night. I sometimes read with the mask on before going to sleep. You might try reading with the machine on during the day. Or knit, if you enjoy doing that kind of thing. Or sit and watch TV in the evening while using the machine. You may feel a little silly at first, but just explain to your husband that you think it will help you acclimate to the machine, so you can sleep better at night. You need to associate the mask and machine with relaxation, with no pressure to "perform" (sleep). You are fighting it right now. You need to change that adversarial way of thinking. It's there to help you.

I hope you sleep better tonight....

Hi there dreamon! I dont know why the ramp would not work.. Okay, I will watch tv with it at cpap ten, but OMG, I cant get the air out of me before
its on me again.. and I DO know I sleep thru this, but I wake up feeling like a had such a battle the night before.. but I will try the tv tonite, and
have my husband try to help me get thru it.. thanks for all your support! have a good night!

echo wrote:Hi Elena, as I was reading these last posts I wanted to share two things with you, and DreamOn already mentioned both. First, *even if* you are a shallow breather and *even if* you are having trouble breathing out against 10cm with no EPR, please give it a go anyway. When I first started on 10.5cm it WAS difficult, and for a while I felt like I was blowing up and having difficulty too... however this can actually work for you, as over time (I suspect) your lungs get stronger and are able to handle the pressure. I have no problem breathing out against 10.5cm now, I hardly even notice it. So I think perhaps you are getting frustrated and think that you cannot handle it. It is not necessarily easy at first, but even after a few days of continuous practice you WILL be able to breath out against that pressure. As dreamon correctly notes, you are ALREADY at that pressure when you're asleep!

Second, in order to train both your brain and your respiratory system, DO use the cpap at 10 cm during the day, while you're relaxed and without the psychological pressure of having to go to sleep. You may even be able to troubleshoot some leak issues this way.

And if all of this does fail, then bipap in indeed a possibility. But I would first give myself the chance to get acclimated to 10cm while you are awake, if I were you. You may be pleasantly surprised at how easy it becomes after a short while.

good luck!

HI ther echo! yes, Im a very shallow breather.. so you think my lungs will get stronger? I was hoping they would have by now if Im doing it while
im sleeing.. You have mastered it, good for you! I just got all excited when I heard another person with RAD found the bipap was the answer..
I will practice at ten tonite and tomorrow during the day.. gotta go, thanks for all the kind words and support!
happy trails!