Ventilator Downloads - Input Requested Pls.

In my opinion, and you know what that is worth... , I would suggest that you place a priority on how you feel. It is interesting to observe the data from the machine, but the bottom line is the goal of having you pop out of bed in the morning feeling fresh, rested, and raring to go.

With that said, the data is important, but not as important as how you feel.

HoseCrusher wrote:In my opinion, and you know what that is worth... , I would suggest that you place a priority on how you feel. It is interesting to observe the data from the machine, but the bottom line is the goal of having you pop out of bed in the morning feeling fresh, rested, and raring to go.

With that said, the data is important, but not as important as how you feel.

I agree with you. Today is world's apart different from yesterday. I still don't feel good, but compared to yesterday.....

I'm not going to post the reports, but two things I found interesting...

On Friday night, I spent all but 0.5% of the night above 95%, but Saturday night, I spent 10% between 90-95%. Still above 90%, but interesting.

My patient triggered breaths were also better on Friday than Saturday.

I emailed my doctor the reports from Friday & Saturday nights, along with my perception of how different the nights were for me and I how felt Saturday and today.

See what she says. Personally, I don't care if the reports indicate 100% better, if I feel WORSE, that matters as much as anything.

Ah Ha!!!

I think I can actually explain that.

When your O2 levels are at 95% or higher, you are in a wakeful mode. When you drop into deeper stages of sleep, your O2 levels drop. Deeper stages of sleep are needed for repairing the body that allows you to wake up rested.

My "guess" is that when you have an average O2 level of say 95% with very little variation, you will wake up not feeling rested. On the other hand if your average is 95% but there are fluctuations both above and below that, and if your desaturations don't fall below 90%, you will wake up feeling much more rested.

I was listening to a cardiac surgeon talk about stray rhythms in the heart. I don't recall the exact phrase, but it went something like this. The heart dances in health and marches to death. The idea is that it is normal to see fluctuations in the body functions. We are not machines that are set to 95% O2. We are living beings that have O2 levels that dance all over the place. As long as the average is decent, and the low levels stay above 90% all is good.

Good info, HoseCrusher. And thanks.

Maybe I'm getting closer than I realize. I woke up about 5 times last night (reset the Ramp and that's how I'm sure) compared to only 2 times Friday night. But I feel so much better today.

I'm definitely leaving the settings the same for tonight and give it a few days to see.

Just stopping by to catch up and say that I hope you are beginning to turn a corner on finding some settings that are at least marginally comfortable. Glad to hear that knowing about starting ramp ipap=epap+2 has helped you in making some decisions about where to start the ramp.

A few posts upstream you asked about ramp time and ramping from ipap=11cm to ipap=17 in 20 minutes. That's increasing the ipap at a rate of 1cm every 3 1/3 minutes (i.e. the ipap goes up by 1 cm in 3 minutes 20 seconds). Now, since you seem to have a bigger problem breathing with ipap=11 than you do with the rate of increase in pressure at this point, that ramp time probably is minimizing the time you feel uncomfortable with an ipap that's lower than you like. If you really feel like you're suffocating during the early part of the ramp, you could try shortening the ramp time to 15 minutes. That way, the ipap pressure increases by 1cm every 2 minutes 40 seconds.

robysue wrote:A few posts upstream you asked about ramp time and ramping from ipap=11cm to ipap=17 in 20 minutes. That's increasing the ipap at a rate of 1cm every 3 1/3 minutes (i.e. the ipap goes up by 1 cm in 3 minutes 20 seconds). Now, since you seem to have a bigger problem breathing with ipap=11 than you do with the rate of increase in pressure at this point, that ramp time probably is minimizing the time you feel uncomfortable with an ipap that's lower than you like. If you really feel like you're suffocating during the early part of the ramp, you could try shortening the ramp time to 15 minutes. That way, the ipap pressure increases by 1cm every 2 minutes 40 seconds.

Thanks so much, robysue. If not for you telling me about the epap+2, I would have given up trying that avenue and would have gone back to my normal settings.

Last night was surprisingly calm. I still woke up a lot, but didn't bother hitting the Ramp. I'm hoping this means that I AM adjusting to the higher IPAP. But one night isn't enough to base anything on.

As long as things are okay, I'm going to stay at these settings, but may reduce the Ramp time as you suggested (thanks again).

I now have the dual prescriptions set up -- Primary are my new settings with the higher min ipap and Ramp -- and Secondary are my old settings with lower min ipap and NO Ramp. So if I have a problem during the night, I can switch back easily and quickly.

Thanks again, robysue. If you hadn't given me this piece of information (epap+2) I would be back to square one with no ideas.

I finally had a chance to stop by again, and a lot has been going on.

I'm so glad that you have been able to find some settings that just might be working for you! That is HUGE! I pray they continue to work for you, and that you start to feel better along with it.

Happy 4th of July to all in the USA today!

Well, it's almost 5:30 am for me and I have not been able to sleep much tonight. We lost power earlier today, was using the ventilator on battery (no oxygen) and the vent sounded weird, plus I was having trouble coping with the high pressure and kept hitting the Ramp. When the power came back on at 3:40, I couldn't get back to sleep at all, so I gave up.

I thought I'd post another piece of information from the ventilator downloads. Since I've been posting a lot from the last week or so, I thought I'd share this piece.

I'm doing it more out of boredom at the moment and thought it might be of interest to somebody...

I've spent a few nights (and a few naps) at the changed settings (epap at 9, min ipap at 17 with the Ramp) and pretty much concluded one thing: The ONLY really good thing coming out of this is the ability to use the Ramp to immediately drop the pressure back down when it increases. I guess I can sleep through 17 a bit more easily, but the pressure is going beyond that and I'm waking up just as much as I was before.

My "in bed" time last night was from 12:10 - 7:25. I would have to check the download (and will when I can) but I can remember waking up at least 4 times and resetting the Ramp to lower the pressure.

I'm wondering if it would be worth trying to LOWER the MAX ipap to 17, preventing the machine from going up any higher. The only question (for me in my uneducated mind) is if doing that is a bad idea.

My thinking has been that if the machine is increasing the pressure as high as 19 on a regular basis (or higher), I must need it to be that high. But do I really? I just don't know.

Madalot wrote: I'm wondering if it would be worth trying to LOWER the MAX ipap to 17, preventing the machine from going up any higher. The only question (for me in my uneducated mind) is if doing that is a bad idea.

My thinking has been that if the machine is increasing the pressure as high as 19 on a regular basis (or higher), I must need it to be that high. But do I really? I just don't know.

I have been wondering this myself but reluctant to mention it. Now that you have the access to the reports and your oximeter you can see just how much it might impact things. My thinking has been if it truly is the pressure increase that is the awakening culprit, how much of a trade off would there be to maybe allow a couple of events and sleep better overall.

Course we don't know for sure how much is really prevented at 18 an 19 pressure.....
What about splitting the difference to see if event number is substantial and if any desats occur using max ipap to 18?

Pugsy wrote:

Madalot wrote: I'm wondering if it would be worth trying to LOWER the MAX ipap to 17, preventing the machine from going up any higher. The only question (for me in my uneducated mind) is if doing that is a bad idea.

My thinking has been that if the machine is increasing the pressure as high as 19 on a regular basis (or higher), I must need it to be that high. But do I really? I just don't know.

I have been wondering this myself but reluctant to mention it. Now that you have the access to the reports and your oximeter you can see just how much it might impact things. My thinking has been if it truly is the pressure increase that is the awakening culprit, how much of a trade off would there be to maybe allow a couple of events and sleep better overall.

Course we don't know for sure how much is really prevented at 18 an 19 pressure.....
What about splitting the difference to see if event number is substantial and if any desats occur using max ipap to 18?

Please don't ever hesitate to mention something you're thinking about. I'm open to ideas, even if there may be a reason they can't be used, I still want to hear them.

Anyway -- this is what I was thinking too. Perhaps lowering the maximum ipap and see if it makes any difference. Since I have access to the data and pulse ox information, I CAN monitor what happens.

I may run this by my doctor before doing it, but definitely feel it should be considered. This is the beauty of the Trilogy -- dual prescriptions so if I find that one isn't working in the middle of the night, it's easy to switch back to the other ones.

Madalot wrote: Please don't ever hesitate to mention something you're thinking about. I'm open to ideas, even if there may be a reason they can't be used, I still want to hear them.

I know...
It is just hard for me to tell someone to maybe allow some events so they can maybe sleep better.

I know first hand what frequent awakenings do. So I have a bit of an idea where you are coming from. Of course I don't have your extra issues to compound things.

We both know that it is possible that if a few events are allowed they can also maybe disrupt sleep..... so...you may be trading one awakening culprit for another but won't know till you try.

I am event worse in REM. I sometimes see the machine go from my 10 min to 18 in what roughly correlates to REM stages. Especially in the wee hours of the morning when REM is more frequent. Now I am lucky in that those changes have never bugged me but if they had I would have dropped the max and just allowed a few events to occur in an effort to have better quality sleep overall. I don't expect to eradicate all events anyway.
But what I would do with my plain jane OSA just can't be put in the same sentence with your situation..hence my reluctance to suggest it.

Pugsy wrote:

Madalot wrote: Please don't ever hesitate to mention something you're thinking about. I'm open to ideas, even if there may be a reason they can't be used, I still want to hear them.

I know...
It is just hard for me to tell someone to maybe allow some events so they can maybe sleep better.

I know first hand what frequent awakenings do. So I have a bit of an idea where you are coming from. Of course I don't have your extra issues to compound things.

We both know that it is possible that if a few events are allowed they can also maybe disrupt sleep..... so...you may be trading one awakening culprit for another but won't know till you try.

I am event worse in REM. I sometimes see the machine go from my 10 min to 18 in what roughly correlates to REM stages. Especially in the wee hours of the morning when REM is more frequent. Now I am lucky in that those changes have never bugged me but if they had I would have dropped the max and just allowed a few events to occur in an effort to have better quality sleep overall. I don't expect to eradicate all events anyway.
But what I would do with my plain jane OSA just can't be put in the same sentence with your situation..hence my reluctance to suggest it.

I hear you! I ran this by my doctor via email (asking to lower the Maximum IPAP to 18) and she responded with an approval for it, saying that the time I spend higher is minimum so it's okay to try it.

But...I am not sure what to do about all the other settings at this point. I WILL keep AVAPS on and lower the maximum ipap to 18, but what about minimum ipap, epap and using the Ramp? That's where I'm not sure what would be best.

If no input arrives on this BEFORE tonight, I think I will do this:

Max Ipap 18
Min Ipap 14-16 (I have to pick a number -- maybe 15 to split it)
Epap 9
No Ramp to start, but will have it available if I need it (on the Trilogy you have to specify that the Ramp is available or it doesn't display as an option on the screen)

I got the download from last night and I reset the pressure with the Ramp 5 times during the night. It's obvious that I woke up AT LEAST 5 times because I was awake enough at least that much to lower the pressure with the Ramp.

Sounds like a good plan to me. Keep changes to a minimum so as to be able to evaluate the lowering of max ceiling.

5 awakenings can sure mess with how we feel. Probably even have a greater impact in your situation.
On the nights I don't remember waking I know my "need" for afternoon nap pretty much goes away but on the nights where I remember waking a handful of times that need for afternoon nap becomes pretty big.
Though since being on cpap at least the need for 8 AM nap has gone away because the awakenings I might have now are much less frequent and related to pain instead of my body screaming for oxygen.

Also pain in itself is tiring. Just wears a person down. Even without OSA in the mix.

Do I need to leave a gap between min & max ipap? I have been trying to adjust to having the minimum ipap at 17 (thus the ramp) but is it a problem to have the min & max at 17 & 18? I thought it might be and that's why I said I would use about 15 as the minimum.