First Post - Now on a Bipap Auto from CPAP "Brick" -My Story

[viking67]

Greetings this is my first post. It's a novel, I know, I just need to get all this out. I found this board about a month ago when I reached a desperate point due to cumulative sleep loss. I've been on a CPAP "brick" for 16 years, started out on 8cmH20, then a few years later the doc bumped it to 10 where I stayed for many years. About a year ago, things got bad and I had all the old symptoms again, fatigue, daytime tiredness, headaches, depression, crankiness. Went in and saw the doc for the first time in many years and he couldn't believe I was still on this ancient machine. Did a new sleep study, gave me a PR S1 150P dataless "brick" in April 2012 (I had no clue then), and raised pressure to 15. I seemed to get some improvement, but over the course of the last 4 months it's gotten so bad I feel like I have gone to hell. I've developed anxiety, I fear going to sleep almost like a phobia of sleep. Wife said I had been snoring a ton in my mask. Wake up with headaches, can't hardly function, and getting more depressed and desperate. Saw doc this month and he gave Ambien, ordered new sleep study, and on 1-25-2013 changed me to bipap. I've been reading this forum extensively, and advocated for bipap auto, and doc agreed and wrote my script for "Bipap Auto, 11-16/8-11 cmH20". I am on Medicare.

I was scared to death after reading this forum that I would get another brick or crap machine. I know that if I'm going to have any shot at getting my sanity back, I'm gonna need a data capable machine. Local DME was fairly cooperative, took back the PR S1 150P brick, and issued a PR S1 Bipap Auto Biflex (DS-750), collected what I thought was a reasonable copay. The RT said the bipap had .2 hours on it, it was a demo or open box or whatever. I said, "may I check blower hours" and she let me, which was cool. The manufacture date says a 05152012 so I figure it's probably a refurb or open box/returned unit. Long as it works, I'm cool. She tells me that because I'm Medicare I get a 5 year warranty, i.e. that I have a 2 year manufacturer warranty but they (the DME) have to fix it if anything goes wrong within 5 years. She let me keep my old humidifier which would fit this machine and didn't try to charge me for a new one (I don't use it anyway). Interesting thing when she went to set it up, she was very open about how to get in to the settings menu (I already knew the trick but she showed me), and then she looked at the doc's script and said, "He wrote it wrong". Didn't know exactly what she meant. She input MaxIPAP: 16, MinEPAP: 8, and MaxPS: 8. Also, I figured it was time to upgrade masks, I had been using the old "profile lite" for years and it has put a little dent/scar on my forehead. RT lady says someone should have noticed this long ago and helped me upgrade. We looked around a bit and settled on Comfort Gel Blue (medium).

When I got home I sat in bed and played with the settings and experimented with biflex and rise time. I settled on no biflex and no rise time (i.e., rise time = 0 and biflex = 0). I like the crisp responsiveness to my breaths. Old cpap rx was 15, and when I start up my auto bipap on the settings listed above, it starts out at ipap 10 and epap 8, which I thought would be way too low. But, knowing it would adjust as needed I left well enough alone, looking forward and hopeful to better sleep and some data in the morning.

So, I slept about the same as always (poorly), woke up feeling like I got very little sleep, as always. I downloaded my data into Sleepyhead and here is what I got:



and



It looks like I am snoring a lot. AHI is reasonably low, but I still feel horrible/fatigued/foggy. I know it's only been one night and from what I've seen of many of your posts, getting this right takes patience and persistence. I do feel better that I have a decent machine. Any thoughts, comments, or support would be helpful regarding any of the above. I'm seeing my sleep doc again on Feb 6, so I can bring my data with me. Thanks in advance.

[chunkyfrog]

This looks very encouraging; and it was your first night on bipap?
For me, it took several months for significant mental improvements to manifest.
This is not unusual.
After so many years of sub-optimal treatment, I hate to tell you to be patient, but what little
I can understand of your data, I expect you will be feeling improvements, which will not be
all at once, and may be gradual, not quickly apparent.
Keep up the fight. You are doing fine.

[viking67]

This looks very encouraging; and it was your first night on bipap?
For me, it took several months for significant mental improvements to manifest.
This is not unusual.
After so many years of sub-optimal treatment, I hate to tell you to be patient, but what little
I can understand of your data, I expect you will be feeling improvements, which will not be
all at once, and may be gradual, not quickly apparent.
Keep up the fight. You are doing fine.

Thanks, chunkyfrog. Yes, last night was my first night on bipap. I figure you're right it's going to take a good while to notice improvement. It's amazing how anxious and desperate I have become about getting sleep. It is hard to be patient but I've seen many people on this forum manage to find their way. Thanks for your encouragement and support.

[4betterO2]

I've been reading this forum extensively, and advocated for bipap auto, and doc agreed and wrote my script for "Bipap Auto, 11-16/8-11 cmH20". ... issued a PR S1 Bipap Auto Biflex (DS-750) ... she looked at the doc's script and said, "He wrote it wrong". Didn't know exactly what she meant. She input MaxIPAP: 16, MinEPAP: 8, and MaxPS: 8.

I'm learning to read graphs but as a newbie I can tell you I'm surprised of what seems a clear lack of congruence, between the Pressure and the HAI curves. It seems the machine would have reacted to those events if it could, but the IPAP was stopped at 16. (Someone on this forum, if you think I'm wrong, correct soon please ). Whether that is a serious issue, I don't know, as it may be that your body will adjust and be progressively more able to react positively to the pressure you are getting?

Since you were used to a higher pressure before, you could ask the doctor to raise the IPAP max limit if the above holds true, and if that type of graph result continues over several days. I would not ask to raise the EPAP setting though, since the purpose of a Bi-Level is to accommodate breathing more naturally than CPAP. Alternatively, if you are very concerned, you could ask the Dr. to take out the Rx settings, and put the machine in full auto mode, so it will self-titrate over a 2-4 weeks period.

Can you verify you did get a model 750, BiPAP machine? the settings the RT gave you seem more like those of an ASV machine (model 950), while settings the doctor wrote look like those for a BiPAP machine (?)

[jweeks]

Hi,

Welcome to the BiPAP club!

It looks like you are max'ing out on the upper pressure. Perhaps you might consider bumping it up a bit. Since your AHI was low, you are probably pretty close to the right upper number. Sometimes just 1 centimeter of pressure more can knock out the snores. Snores don't count against your AHI, but in recent times, sleep doctors are becoming increasingly aware that any levels of snoring can disrupt your sleep. When I see snores in my data, I go after them to try to prevent them from happening again.

-john-

[viking67]

I've been reading this forum extensively, and advocated for bipap auto, and doc agreed and wrote my script for "Bipap Auto, 11-16/8-11 cmH20". ... issued a PR S1 Bipap Auto Biflex (DS-750) ... she looked at the doc's script and said, "He wrote it wrong". Didn't know exactly what she meant. She input MaxIPAP: 16, MinEPAP: 8, and MaxPS: 8.

I'm learning to read graphs but as a newbie I can tell you I'm surprised of what seems a clear lack of congruence, between the Pressure and the HAI curves. It seems the machine would have reacted to those events if it could, but the IPAP was stopped at 16. (Someone on this forum, if you think I'm wrong, correct soon please ). Whether that is a serious issue, I don't know, as it may be that your body will adjust and be progressively more able to react positively to the pressure you are getting?

Since you were used to a higher pressure before, you could ask the doctor to raise the IPAP max limit if the above holds true, and if that type of graph result continues over several days. I would not ask to raise the EPAP setting though, since the purpose of a Bi-Level is to accommodate breathing more naturally than CPAP. Alternatively, if you are very concerned, you could ask the Dr. to take out the Rx settings, and put the machine in full auto mode, so it will self-titrate over a 2-4 weeks period.

Can you verify you did get a model 750, BiPAP machine? the settings the RT gave you seem more like those of an ASV machine (model 950), while settings the doctor wrote look like those for a BiPAP machine (?)

Yes, it's a 750 BIPAP Auto. I wish I did have an ASV machine, those seem to handle everything comprehensively. I am a tinkerer so last night I did change IPAP to 17 and my snore index went from 12.51 to 2.5. Will post another sleepyhead graph in a minute here.

[viking67]

Hi,

Welcome to the BiPAP club!

It looks like you are max'ing out on the upper pressure. Perhaps you might consider bumping it up a bit. Since your AHI was low, you are probably pretty close to the right upper number. Sometimes just 1 centimeter of pressure more can knock out the snores. Snores don't count against your AHI, but in recent times, sleep doctors are becoming increasingly aware that any levels of snoring can disrupt your sleep. When I see snores in my data, I go after them to try to prevent them from happening again.

-john-

Hey John, thanks for the comment. I did in fact decide to increase IPAP +1 from 16 to 17 last night, and it appears it may have made quite a difference with the snores. My VS number went from 12.51 to 2.25, and AHI was 1.13 which is pretty good from what I gather. Also, I must say I actually feel better this morning. Not as much of the zombie feeling. Thank god. Here are my sleepyhead graphs for last night (night #2 on BIPAP):



and



How does this look to you guys? Better than night #1 for sure. I love having data. It reduces my anxiety and worry because I have something to hold on to and knowledge that I can tweak problems and work things out. I do realize the advice given previously is important--only change one thing at a time and give it a week or so to level out. Long term improvements and benefits take time and patience.

[herefishy]

"I love it when a plan comes together". Seldom do we see this level of instant gratification.

[VikingGnome]

Your leaks seem high. The machine can compensate for up to 24 but your graph last night stayed above 30 most of the night. You are probably haven't figured out your new mask yet. It's leaking like a sieve. That could certainly rob you benefits from increased pressure. More pressure = More Leaks with poor fitting mask.

[Pugsy]

Your leaks seem high. The machine can compensate for up to 24 but your graph last night stayed above 30 most of the night. You are probably haven't figured out your new mask yet. It's leaking like a sieve. That could certainly rob you benefits from increased pressure. More pressure = More Leaks with poor fitting mask.

ResMed machines are the only machines that use the 24 L/min line in the sand. Other brands use the term total leak and not excess leak (that is where the 24 L/min comes from).

So when comparing leak numbers make sure that we know what is being compared. S9 leak numbers and PR S1 leak numbers are 2 different animals and are not the same thing and thus cannot be lumped into the same basket.

Actually Viking67's leak is very decent. The machine is reporting total leak which is vent rate plus any excess leak and a lot of the variation being seen is normal pressure increase equals vent rate increase thing.

So the mask is NOT leaking like a sieve at all. PR S1 large leak territory for a model 750 machine is going to be somewhere around 80 to 90 L/min. PR S1 users won't ever see the nice 0.0 or whatever leak numbers that S9 users see because the machines aren't reporting the same value.

[viking67]

Thanks pugsy for straightening that out. It makes sense why vikinggnome would have thought that it was "leaking like a sieve" (love that expression) if she is referencing the Resmed standard/method. So it is different for the PR S1 Bipap Auto. You can see how my leak number did increase to 46 avg from 42 the night before. This is only my 2nd night with the new mask and machine, and I did bump the IPAP max up +1 to 17, so that may have something to with it. I used to use a "profile lite" gel mask and I strapped that sucker so tight to my face it left marks and dents. The RT lady explained that is not necessary and so I'm trying to get used to the comfortgel blue nasal mask at the least possible tightness that doesn't cause/allow leaks.

And pugsy, thanks for commenting in my thread. I've read so many of your posts, it's like having a cpap rockstar stop by. Hah.

Here's to better sleep...

[DoriC]

Pugsy, do you have any thoughts about the PS? Do you think it should be lower? I love these posts about Bipaps because I'm experimenting with the S9VpapAuto for the last 2 weeks. I really love this machine and will probably give my personal report on it in a new thread.

[Pugsy]

Pugsy, do you have any thoughts about the PS? Do you think it should be lower? I love these posts about Bipaps because I'm experimenting with the S9VpapAuto for the last 2 weeks. I really love this machine and will probably give my personal report on it in a new thread.

Wellllllll.......PS of 8 seems more like someone is trying to emulate a ASV type of setting and probably not what I would want to try but remember with the PR S1 bipaps just because PS can be 8 cm doesn't mean it will be 8 cm. You can look at the reports and see the variations in PS and most of the time the range isn't nearly so remarkable...so it appears to work anyway.

We can't compare PS of 8 with a Respironics machine and a PS of 8 with a ResMed machine because they function differently.
ResMed PS is fixed.....Respironics PS roams around and just because it can see an 8 cm spread doesn't mean there will always be an 8 cm spread.

So don't try to correlate a Respironics pressure support setting with a Resmed PS setting when using auto adjusting mode. They don't work the same and we can't expect a similar setting with one machine to function the same with the other brand.

Looks to me like the machine's self adjusting Pressure support seems to be staying well within a more "normal" range anyway...despite it being set at 8 cm...it seems to keep a much tighter range when left to it's own devices anyway. So while it "can" roam to 8 cm range...the bulk of the night it doesn't come anywhere close to that large of a range..
Now if a S9 VPAP Auto was being used with the fixed PS...we would be having a different discussion.

[viking67]

Pugsy, do you have any thoughts about the PS? Do you think it should be lower? I love these posts about Bipaps because I'm experimenting with the S9VpapAuto for the last 2 weeks. I really love this machine and will probably give my personal report on it in a new thread.

Wellllllll.......PS of 8 seems more like someone is trying to emulate a ASV type of setting and probably not what I would want to try but remember with the PR S1 bipaps just because PS can be 8 cm doesn't mean it will be 8 cm. You can look at the reports and see the variations in PS and most of the time the range isn't nearly so remarkable...so it appears to work anyway.

We can't compare PS of 8 with a Respironics machine and a PS of 8 with a ResMed machine because they function differently.
ResMed PS is fixed.....Respironics PS roams around and just because it can see an 8 cm spread doesn't mean there will always be an 8 cm spread.

So don't try to correlate a Respironics pressure support setting with a Resmed PS setting when using auto adjusting mode. They don't work the same and we can't expect a similar setting with one machine to function the same with the other brand.

Looks to me like the machine's self adjusting Pressure support seems to be staying well within a more "normal" range anyway...despite it being set at 8 cm...it seems to keep a much tighter range when left to it's own devices anyway. So while it "can" roam to 8 cm range...the bulk of the night it doesn't come anywhere close to that large of a range..
Now if a S9 VPAP Auto was being used with the fixed PS...we would be having a different discussion.

Yeah, I wondered about the Max-PS setting as well. My doctor never actually specified PS on the RX. He actually just put a range for IPAP and a range for EPAP. Maybe that's why the RT lady said, "He wrote it wrong". (See below for image of actual RX). A PS of 8 is a big difference, but from the graphs so far, the largest gap it auto generated so far was about 5, and that was only for a short time. Most other times it's 2 or 3. Pugsy, interesting comment that you say it almost emulates ASV. It's only been 2 nights so far, but the trend seems to be it starts on IPAP 10 and EPAP 8, and very quickly (within 1 hour) rises to MaxIPAP pressure, floats there for the first half of the night, dealing with various events and then things chill out for a while, both IPAP and EPAP slowly begin to come down AND the PS gap opens up a bit. Interesting, this must be related specifically, as Pugsy implied, to the PR S1 Algorithm and how it interfaces with my particular breathing and event patterns. Fascinating, really. Let's hope we dance a good dance. Here is my RX:

[DoriC]

Pugsy, do you have any thoughts about the PS? Do you think it should be lower? I love these posts about Bipaps because I'm experimenting with the S9VpapAuto for the last 2 weeks. I really love this machine and will probably give my personal report on it in a new thread.

Yes, I can now actually see this great example of how SystemOne and Resmed do different "dances". Light Bulb!!