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Steven B. Ronsen updated their profile
Sep 15, 2018
Hi everyone,

Since I'm a bit of a rebel and because I want to really take my own health under control, I have succeeded in finding and installing the Respironics Encore Pro 2.2 viewer software an I got it to read the data from my first 3 nights off of my System One's SD card. I saved the report and attached the PDF file to this post. I would love if some could look over these numbers which look really good to me, especially as I'm just starting with CPAP therapy. Anything weird jumping out at anyone?

Secondly, I would like your advice on a change I'd like to make to my low pressure setting (yes I found the secret handshake to access the provider settings in my System One). When I got the machine, I asked the person that served me at the provider if they could let me adjust the pressure myself if need be. I did figure instinctively that the range of my prescription (4 to 18) was probably nedlessly wide as Mike noted in his first reply to my introductory post. But she warned me rather sternly that I should never do so and that I would need a new prescription from my doc to change anything. I don't think I'd have the patience to wait for a new prescription if anything made me uncomfortable.

But anyhow, the range did not cause me any major discomfort during my first 3 nights except for one thing... I love my System One machine except for something which the M series I was titrated with didn't do and that I didn't notice when I tested it at the provider. It is a short burst of air the machine sometimes does at the end of my exhalation/start of inspiration. I suspect that my breathing is longer than what is typical and the end of my exhalation might be interpreted as the start of an apnea event by the machine. I think I do breathe slower than normal, probably the effect of practicing meditation and yoga for a long time even though I don't practice much anymore. I read in another forum that this burst of air from the machine is a "test" it performs to see if the patient's airway is open. It can be a bit startling but again, nothing major. It's only slightly annoying when I'm trying to fall asleep and it has not woken me up yet once I was sleeping.

What has started bothering me more when I'm trying to fall asleep is what happens right after the burst. My low pressure being set to 4, it feels like I'm suffocating a little when I start breathing in again after the end of my exhale, especially after one of those bursts. It's like the machine is not pushing enough air quickly enough and it feels like I'm gasping so I was thinking of raising my low pressure setting from 4 to 6 to alleviate this. Do you think it's a good idea to bring the low pressure setting up and is 4 to 6 too much of a jump? I was titrated at 15 when I had the test machine for 3 nights last November but, as you will see in the attached PDF, my 90% pressure is a little below 8 and the highest it went to in 3 days is 10 (for a very short time). So it looks like I'm getting good treatment at 8. Makes me happy I don't have a fixed CPAP blowing in my face at 15 all night long. I think I would have a very hard time with that.

Thanks in advance for any opinions or advice you may have!

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4 is pretty low considering your initial titrated pressure was 15. First you overall data is great. If you were not to make a change you would be ok. I did notice a few things. Bare in mind this is the first time that I have seen PR1 data. I really like the detail. 4-18 is pretty broad range. The key with an autoPAP is to find your magic number. Once your optimal titration pressure is establish then you can give yourself some wiggle room at bothe ends.

I noticed in your data that 9cm seemed to be your magic number with this data. I also noticed that at 9cm your AHI was 5.3. Without knowing how long you are sleeping I am eft only to guess that it is not long enough fro you to reach your titration potential. In other words the machine is taking to long to get where it needs to be. For that reason alone you may want to talk to your doc about raising the bottom end pressure. Once the bottom is raised you should have better luck finding your magic number. Then you can lower the top end to tighten it up. I would not give it any more than 2cm of pressure going up or down. Your range will end up being 8-13 or 10-15 depending on what your average pressure is.

Look at the comfort settings in your user manual. Learn about things like Ti, cycle, and trigger effects. Figure out what your avg. breaths per minute are and set the machine to breathe with you. This will help with that "puff" of air.
Good post Rock.

No wonder if his machine is set to start at 4, it would take awhile to get to 15. Another example of setting a patient up to fail.
Thanks for the reply Rock! Much appreciated to have the advice of a pro.

Regarding my titration of 15, please both take into account that I did the test at home unsupervised by a pro. I woke up 4 or 5 times each of the 3 nights I had the machine with the full face mask leaking like crazy and the machine blowing full blast in my face. I feel the number of 15 might have been artificially boosted due to the testing circumstances and the mask leaks I experienced.

As for how long I sleep, the last 3 nights I slept an average of 7 hours a night. A little less on the first night Thursday, closer to 8 hours Friday and about 7.5 last night. Last night I also had to get up to go to the bathroom so that is why there's 2 pages in the report for the same date. Each day it took me less time than the day before to actually fall asleep as I'm getting used to the mask and my machine. I've never been one to sleep long hours, even before I had any apnea symptoms.

This all makes me think that I really do not need to reach 15 to get proper treatment. As you see, my 90% average is 8 and I feel great, better than I have in years. No headaches in the morning, no fogginess, no afternoon sleepiness and I am definitely more alert. So it seems I get oxygenated properly. When i see my doc again I will probably have seen my provider first and they will analyze my first months data. I'll know where I stand better at that point.

Again, thank you very much for your input. It helps a lot!
Carol- Thanks, if I could type and spell at the same time I would be dangerous.

Stephane- Auto-titration is rough. I call it trial by PAP. It can be a long journey for someone. I am glad that you found the secret handshake. I hope that one day you find a team that will support your use of it. I wish you luck on your road back to good health.
Rock - Yes I'm realizing auto-titration can be hard and I will be threading carefully with any changes I make. Especially since, after 4 nights it feels like I'm off to a great start despite a little scare I had last night ;)

What happened is that, I had upped my low pressure to 6 sometime yesterday, making no other changes to my machine's settings. But I didn't test it there and then (my mask was clean and drying) Also, keep in mind that yesterday was the first time I took my SD card out of my machine and connected it to a reader on one of my computers. I then downloaded its data to Encore Pro 2.2, looked at the data and saved the report you saw. That is all I did in the Encore software and I promptly put the card back in my machine.

Now, when I got to bed last night, my wife was already sleeping (I always go to bed later than she does). I put my mask on and my machine started automatically as it's set to do. But the mask started to make a weird noise and the machine was not adapting to my breathing as usual. It was really weird. The way I heard it it seemed that the noise came from the regular outlet holes in the elbow (ridiculous idea as this mask is super quite but it was late...)

I started getting nervous and though my setting change might have disturbed something else. I got a flashlight out and reset my low pressure to 4 and tried again. Same problem. Noise at the mask and machine blowing a steady flow of air without reacting to my breathing.

Now I was panicking ;) I turned the machine off and re-checked all my settings and the provider settings again and everything looked fine. By then Isabelle was awake and told me I might as well turn the light on my side table on. I felt bad for waking her up as she had to get up real early this morning. I got the card out of the machine and got to my computer to check it, looking at the actual files on it thinking there might be a settings file for deeper stuff not accessible from the patient or provider menu on the machine that might have been modified to default values by my copy of Encore Pro. I had made a backup of the card's data before getting anything from it into Encore. But I found no such files. Proves that, late at night, you never think of the obvious (you probably have guessed what it is by now ;)

I got back to my room, got the card back in the machine and tried again. Still not working right. Now I was imagining going back to the provider with my tail between my legs begging for them to fix my machine and having to admit my "illegal" actions ;) Then finally it hit me... I did what I should have done from the start and took off the mask cushion from my Activa LT mask and put it back on... correctly. Problem solved! ... and lesson learned ;)

I was so relieved I forgot to set my low pressure back to 6 and got into bed and had another good night... although too short :) So I'll try the higher pressure tonight and will probably start at 5. Baby steps right? I was getting a little cocky so last night's adventures brought me back down to earth :)

Good day everyone!
I'm not a pro but I have had similar experiences to you. I am using Respironics BiPap auto and also found that the doctor had set my lower level too low for comfort and I would sometimes feel like I was suffocating. I upped a couple of notches myself (that old secret handshake) and have been much more comfortable.

I also wanted to mention that when I first started out a few months ago, my 90% number was considerably lower (maybe 10 or 11 or so) than it is now. I think that I am hovering around 13-14. I don't know if this is a function of the machine learning over time or what...so it is possible that yours will go up a little over time. Maybe the Pros on here can weigh in,

Also, I sometimes get that same feeling that you described that I am breathing too slowly for the machine and I can feel some pressure exerting itself against my exhaling. I don't know what to do with that but seems that it is part of both the System One and the M series since that is the one that I am on.

I have been waiting for the patient software to come out before moving over to the System One....if you have a way of getting it and don't want to post, would you kindly private message me?

Thanks-- and good luck-- and welcome!

Jan
Jan said:
I'm not a pro but I have had similar experiences to you. I am using Respironics BiPap auto and also found that the doctor had set my lower level too low for comfort and I would sometimes feel like I was suffocating. I upped a couple of notches myself (that old secret handshake) and have been much more comfortable.

I also wanted to mention that when I first started out a few months ago, my 90% number was considerably lower (maybe 10 or 11 or so) than it is now. I think that I am hovering around 13-14. I don't know if this is a function of the machine learning over time or what...so it is possible that yours will go up a little over time. Maybe the Pros on here can weigh in,

Also, I sometimes get that same feeling that you described that I am breathing too slowly for the machine and I can feel some pressure exerting itself against my exhaling. I don't know what to do with that but seems that it is part of both the System One and the M series since that is the one that I am on.

I have been waiting for the patient software to come out before moving over to the System One....if you have a way of getting it and don't want to post, would you kindly private message me?

Thanks-- and good luck-- and welcome!

Jan

i also have been using the pr system one (apap) for a week or so and what you are detecting is the frequent test pulse that the machine sends to determine how open your airway is when you have an event. DRIVES ME CRAZY!!!! it definitely wakes me many times, especially right when you start falling asleep. in case you haven't found it yet, there is a waveform sheet that shows every breath you take. click on the little blue icon next to your uploaded data with the s shape. good luck.....i still can't sleep with this machine yet. i had no problem with the leaf blower before, but wasn't feeling any better.
Jan said:
I also wanted to mention that when I first started out a few months ago, my 90% number was considerably lower (maybe 10 or 11 or so) than it is now. I think that I am hovering around 13-14. I don't know if this is a function of the machine learning over time or what...so it is possible that yours will go up a little over time. Maybe the Pros on here can weigh in.

I would love if the pros could weigh in on that too. So far I feel very comfortable with the pressure my machine is giving me and my AHI numbers have been well below 5 each night I used my CPAP machine so far. That's even if the machine never gives me pressure above 10-11 and a 90% number of 8 which is well below my prescription of 15. Looking at my chart, the pressures at which I seem to be spending most of the night are 6 and 7 and these are the pressures where I get the lowest AHI. This is just 4 nights of data but that's interesting...

Jan said:
Also, I sometimes get that same feeling that you described that I am breathing too slowly for the machine and I can feel some pressure exerting itself against my exhaling. I don't know what to do with that but seems that it is part of both the System One and the M series since that is the one that I am on.

In my case, it was not just pressure against my exhale, the M series I tested with did that and that was ok. What my System One seems to be doing is blowing a higher pressure but short "puff" of air at the end of my exhale and sometimes at the start of my inhale (so probably at the same "place" in the machine's algorithm) but that can be startling. It hasn't waken me up me while I was already sleeping but, especially last night, it has extended the time I would have taken to fall asleep as it startled me out of my "descent" into sleep 3 or 4 times. Annoying...

On the other hand, I did up my low pressure setting to 5 this afternoon and breathed a few minutes with the machine and it hasn't given me that air burst. I'll see how it goes for the entire night later.

Thanks for chiming in Jan and check your messages...
Jan you also may wnat to learn more about the comfort settings of your machine as I suggested to Stephane. Judy and jnk our the true pros in that area. I also belive that if your range was set to low that you may have had the same problem as Stephane. The machine just may have not had enough time to get to your optimal pressure. By raising your bottom end pressure you may have allowed the machine to do its job. We have to remember that even though these units are considered "smart machines" that they are still confined by pre-programed rules.
Well, now that I have a week's worth of data to look at in Encore Pro, I notice a few important things. First is that, my decision to up my low pressure from 4 to 5 on my machine paid of. The first few nights I was having most of my AHIs at 4. My average AHI went down from around 3.5/3.6 to around 2.0/2.2. It also helped alleviate the sense of suffocation I had after one of my machine's Pressure Pulses or simply at the start of an inhale as I have my A-Flex sensitivity set to 3. Happy about that! See the PDF attached.

The WaveForm reports are interesting too (and I also attached last night's). They show that the Pressure Pulses (PP) are there mostly when I'm trying to fall asleep when I'm breathing slower and deeper. It's clear looking at the waveform when I fall asleep as my breathing pattern changes completely: not as deep and faster but much more regular. At that point the PPs happen mostly when I'm having or am about to have an apnea event and are mostly successful in getting me out of it. This probably contributes to keeping my overall pressure a lot lower than my prescription of 15. I'm very happy about that too!

At this point, I'm not changing anything else (except tweaking humidity level) so my doc and the lady at my DME won't be too mad at me ;) But the reports don't lie. It also looks like I'm getting more and more comfortable with the therapy. I didn't have a bad night yet where the mask bothered me and I had the urge to remove it. I was afraid I would get a lot more annoyed by it but the Activa LT rarely moves on my face and, although I can't say I don't feel it on my face, it's not nearly the inconvenience I feared it might be.

Lastly, I must say that, having the Encore Pro software to see my complete sleep data is very empowering to me, even if I don't understand all of it yet. I recommend everyone gets and installs it (Google it!). It's not "legal" per say but, for PR System One machines, there is no patient viewer software yet and seeing this data regularly is important IMO. In my case it tells me that my therapy is working and that the small pressure change I made for my own comfort is not only having no negative effect, it's actually helping me.

Sleep well everyone!
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