any advice greatly appreciated

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Lucyhere
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Re: any advice greatly appreciated

Post by Lucyhere » Sun Apr 10, 2016 1:25 pm

palerider wrote:
Julie wrote:No one's saying to change from auto to cpap mode... no point in doing that now, but we want to know if you're having real centrals all night vs a couple at either end of the night because if they're all nighters, you may need a different type of machine to address them as a 'regular' c- or autopap won't do it.
wulfman is... it's his schtick.


I'd take Den's advice over yours in a new york minute! He knows more than you do; certainly as much. The difference is he doesn't have to shove his superior knowledge in peoples' faces!
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lilly747
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Re: any advice greatly appreciated

Post by lilly747 » Sun Apr 10, 2016 1:27 pm

palerider wrote: when she does have clusters of them,it's frequently as pressure is ramping down from a peak
Palerider just to note, all my CAs are when pressure is ramping down, as in exhale with PS too. Don't know what it means...just an observation. High pressure or pressure going up , no CAs

sue60
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Re: any advice greatly appreciated

Post by sue60 » Sun Apr 10, 2016 2:46 pm

Well, I've gotten a lot of great advice from many knowledgeable people this weekend for which I am grateful. I am no longer afraid of making changes in the settings and most importantly I am hopeful that I will get to where I need to be hopefully before my next MD visit in about 3 weeks. I am going to try every ones' advice and see what the numbers say this week. I will still post my sleep and titration studies this week as soon as I can. Thanks to all who cared enough to use their time to give me advice! Will let you all know the outcomes-

Sue

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robysue
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Re: any advice greatly appreciated

Post by robysue » Mon Apr 11, 2016 1:29 am

sue60,

I know that I'm late to the conversation. (Other things in my life this weekend.)

The two screen shots you showed as well as the stuff you've written indicate that there's a very real possibility that those strings of centrals may very well be real centrals. Yes, your sleep studies didn't mention any centrals, but a small percentage of new CPAPers develop problems with centrals after starting therapy. It doesn't always kick in during the titration study. And it may not be a problem every single night. And for some people who develop CAs after starting CPAP therapy, the CAs eventually go away on their own after a few weeks. For a few unlucky ones, however, the CAs persist even after several weeks, and those are the ones who eventually wind up on ASV machines. Because the AHI has been bouncing around so much and the reason seems to be a great variability in the CAI from night to night, this situation needs to be reported to your sleep doctor. (Although your sleep doc may indeed be an idiot as Den seems to think.)

I know you've already done that and your sleep doc does seem a bit dense. But you're going to have to be persistent: You need to tell the sleep doc's office again (and again and again) that your machine is reporting alarming CAI numbers most nights. Tell them they need to download the daily detailed data (or give it to them) and look at it. And tell the office that you really need an appointment with the sleep doc to discuss the data from the machine. Because if this kind of data pattern continues for a month or more, it really is time to do another sleep test in the lab to see what the heck is going on in terms of centrals.

It could be that Den is right and the APAP is aggravating the CAs. On the night you posted the data for, the long strings of CAs start just as the machine starts to reduce the pressure after increasing in response to flow limitations. Your machine is reacting rather aggressively to the flow limitations by increasing the pressure from a low of what looks to be about 7 cm to a high of about 14.5. The only reason the machine is increasing the pressure on this night are the flow limitations. That's what the machine is designed to do, but if the increase in pressures sets up the CO2 overshoot/undershoot cycle that starts as soon as the flow limitation is "fixed", then either a tighter range pressure or a switch to straight CPAP might help eliminate the CAs.

You could experiment with the following things since they may help with figuring out whether the CAs really are being caused by CPAP:

1) Switch to straight CPAP like Den suggests. Given some of the other things you've said, I'm not sure I'd recommend starting out at 15cm. (But then it also seems strange that they started the titration study at 10cm instead of 4-6 cm.)

2) Try a narrower APAP range. That would make the pressure increases less substantial and that might make the increase in pressure less likely to induce the strings of CAs.

Finally a sort of crazy sounding thing that also takes into account that you took Ambien on the sleep study nights when no CAs were recorded. It's just possible that you are sort of waking up with the pressure reaches its max setting, and as the machine starts lowering the pressure, you are having a difficult time transitioning back to real sleep. And those CAs are an extended set of sleep onset centrals that are persistent enough to cause a problem in establishing real sleep. It's possible that on the sleep studies, the Ambien worked well enough to allow you to quickly transition to back to sleep after any wakes/arousals caused by the pressure increases. And in that case, it could be that taking Ambien for a week or so might be enough to let your body learn how to sleep with the CPAP and that may allow the CAs to disappear on their own.

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Re: any advice greatly appreciated

Post by Guest » Tue Apr 12, 2016 12:56 pm

robysue wrote:sue60,
test
I know that I'm late to the conversation. (Other things in my life this weekend.)

The two screen shots you showed as well as the stuff you've written indicate that there's a very real possibility that those strings of centrals may very well be real centrals. Yes, your sleep studies didn't mention any centrals, but a small percentage of new CPAPers develop problems with centrals after starting therapy. It doesn't always kick in during the titration study. And it may not be a problem every single night. And for some people who develop CAs after starting CPAP therapy, the CAs eventually go away on their own after a few weeks. For a few unlucky ones, however, the CAs persist even after several weeks, and those are the ones who eventually wind up on ASV machines. Because the AHI has been bouncing around so much and the reason seems to be a great variability in the CAI from night to night, this situation needs to be reported to your sleep doctor. (Although your sleep doc may indeed be an idiot as Den seems to think.)

I know you've already done that and your sleep doc does seem a bit dense. But you're going to have to be persistent: You need to tell the sleep doc's office again (and again and again) that your machine is reporting alarming CAI numbers most nights. Tell them they need to download the daily detailed data (or give it to them) and look at it. And tell the office that you really need an appointment with the sleep doc to discuss the data from the machine. Because if this kind of data pattern continues for a month or more, it really is time to do another sleep test in the lab to see what the heck is going on in terms of centrals.

It could be that Den is right and the APAP is aggravating the CAs. On the night you posted the data for, the long strings of CAs start just as the machine starts to reduce the pressure after increasing in response to flow limitations. Your machine is reacting rather aggressively to the flow limitations by increasing the pressure from a low of what looks to be about 7 cm to a high of about 14.5. The only reason the machine is increasing the pressure on this night are the flow limitations. That's what the machine is designed to do, but if the increase in pressures sets up the CO2 overshoot/undershoot cycle that starts as soon as the flow limitation is "fixed", then either a tighter range pressure or a switch to straight CPAP might help eliminate the CAs.

You could experiment with the following things since they may help with figuring out whether the CAs really are being caused by CPAP:

1) Switch to straight CPAP like Den suggests. Given some of the other things you've said, I'm not sure I'd recommend starting out at 15cm. (But then it also seems strange that they started the titration study at 10cm instead of 4-6 cm.)

2) Try a narrower APAP range. That would make the pressure increases less substantial and that might make the increase in pressure less likely to induce the strings of CAs.

Finally a sort of crazy sounding thing that also takes into account that you took Ambien on the sleep study nights when no CAs were recorded. It's just possible that you are sort of waking up with the pressure reaches its max setting, and as the machine starts lowering the pressure, you are having a difficult time transitioning back to real sleep. And those CAs are an extended set of sleep onset centrals that are persistent enough to cause a problem in establishing real sleep. It's possible that on the sleep studies, the Ambien worked well enough to allow you to quickly transition to back to sleep after any wakes/arousals caused by the pressure increases. And in that case, it could be that taking Ambien for a week or so might be enough to let your body learn how to sleep with the CPAP and that may allow the CAs to disappear on their own.

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Re: any advice greatly appreciated

Post by PoolQ » Tue Apr 12, 2016 1:01 pm

Sorry Robysue, I didn't mean to steal your post. if you notice that in quoting your post one of the first lines in the quote is "test".
I was searching on yahoo for information and it listed this thread and when I clicked on the link it opened asking me to submit YOUR post, I added the test and clicked submit and it posted the quote from guest.

How very strange to get sent to this forum into an OPEN post asking for me to submit it. Clicked the link 3 different times and was always the same

http://r.search.yahoo.com/_ylt=A0LEVz_I ... b6kivIpWY-
that is the link

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palerider
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Re: any advice greatly appreciated

Post by palerider » Tue Apr 12, 2016 1:10 pm

PoolQ wrote:Sorry Robysue, I didn't mean to steal your post. if you notice that in quoting your post one of the first lines in the quote is "test".
nothing right, this one does....

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sue60
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Re: One week update

Post by sue60 » Sun Apr 17, 2016 2:34 pm

Hello all,

Have tried a few different range settings this week to no avail at first ; then I obtained my sleep reports and read them in detail. I also scanned them in at http://imgur.com/a/SMR5n
Seems they did recommend a pressure of 15 after all! Why would my doc never mention it? I set my machine to 15-15 and left the EPR at 3 as I was afraid to suffer aeorphagia like when I first started- I actually missed some days of work due to it. Anyway- night #1 got a AHI of 1, then night #2 the ahi was 2- I actually felt different.

I pulled a dumb move last night thinking with AhI's that low perhaps I could just try inching down and that would help the air swallowing- so I tried 14-14 last night and the AHI shot up to 11 - centrals as usual. I've been reading as much as I can on here and know that Rome wasn't built in a day. So its back to 15-15 tonight and see how it does for a solid week!

I do believe my centrals are true and not machine induced as my husband says for as long as he can remember (many years) when I sleep I get real quiet- either stop or breath really shallow for a count of 20 then take 2 or 3 deep breaths- in a peaceful manner- just my pattern. So, I'm guessing that if I've done that for a long time without/before the machine ,then its not the machine. Is it surprising an auto/cpap is able to control centrals? Even though it is a straight pressure like cpap, I read I can get more info by leaving it in autopap mode?

Also, curious a to what would be the difference between using the EPR feature on auto/cpap and switching to a Bipap machine? I fear my doc who seems clueless will make some bonehead recommendation that is not necessary. For now just watching my numbers for awhile and tweaking what I can, at least I am hopeful finally thanks to all of you! I will keep reading!

Susan

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Wulfman...
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Re: One week update

Post by Wulfman... » Sun Apr 17, 2016 3:21 pm

sue60 wrote:Hello all,

Have tried a few different range settings this week to no avail at first ; then I obtained my sleep reports and read them in detail. I also scanned them in at http://imgur.com/a/SMR5n
Seems they did recommend a pressure of 15 after all! Why would my doc never mention it? I set my machine to 15-15 and left the EPR at 3 as I was afraid to suffer aeorphagia like when I first started- I actually missed some days of work due to it. Anyway- night #1 got a AHI of 1, then night #2 the ahi was 2- I actually felt different.

I pulled a dumb move last night thinking with AhI's that low perhaps I could just try inching down and that would help the air swallowing- so I tried 14-14 last night and the AHI shot up to 11 - centrals as usual. I've been reading as much as I can on here and know that Rome wasn't built in a day. So its back to 15-15 tonight and see how it does for a solid week!

I do believe my centrals are true and not machine induced as my husband says for as long as he can remember (many years) when I sleep I get real quiet- either stop or breath really shallow for a count of 20 then take 2 or 3 deep breaths- in a peaceful manner- just my pattern. So, I'm guessing that if I've done that for a long time without/before the machine ,then its not the machine. Is it surprising an auto/cpap is able to control centrals? Even though it is a straight pressure like cpap, I read I can get more info by leaving it in autopap mode?

Also, curious a to what would be the difference between using the EPR feature on auto/cpap and switching to a Bipap machine? I fear my doc who seems clueless will make some bonehead recommendation that is not necessary. For now just watching my numbers for awhile and tweaking what I can, at least I am hopeful finally thanks to all of you! I will keep reading!

Susan
Gee.......imagine that! A fixed pressure that WORKS.......

When you set an APAP with the minimum and maximum to the same pressure, you essentially have a straight pressure CPAP.
The main thing it records that way is the Flow Limitations (and maybe a few other things), but it can't move the pressure, so it's essentially a CPAP.

As far as BiPAP or Bilevel therapy, if this straight pressure actually works, you should be OK. Your pressures are a little below where typical (higher) bilevel pressures are recommended......16 and above......unless there are other extenuating circumstances or conditions.

But, keep us posted as to what you're seeing and good luck.


Den

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palerider
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Re: One week update

Post by palerider » Sun Apr 17, 2016 4:31 pm

sue60 wrote:I pulled a dumb move last night thinking with AhI's that low perhaps I could just try inching down and that would help the air swallowing- so I tried 14-14 last night and the AHI shot up to 11 - centrals as usual. I've been reading as much as I can on here and know that Rome wasn't built in a day. So its back to 15-15 tonight and see how it does for a solid week!
it's important to remember that your central apnea is variable, with NO changes you have some days that are great, and some days that are terrible. basing anything on a single nights data isn't a good thing.

also, I missed the part in your sleep study where they said anything about 15cm pressure, since they stopped testing at 13cm...

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sue60
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Re: any advice greatly appreciated

Post by sue60 » Mon Apr 18, 2016 3:43 pm

Hi Palerider,

I posted my initial sleep study that did stop at 13 but then the titration study , also posted, went to 15 for control of the "obstructive apneas while on my back'. I did not have centrals during that study. Now that's all I have is centrals , no obstructive, as I am a side sleeper. It could have been coincidence that my numbers got good for 2 nights- which were with a 15-15 that also coincided with a really good chiropractic neck adjustment. Last night went back to 11. Time should tell for sure, if anything is for sure with my case being so all over the map. I know you looked at my collective data. I will update on the weekend again, most likely asking for advice if I should stay the course and juggle the settings for a couple of months longer, or ask the doc, who I see on the 29th for something else. Thanks for your interest and input!

Susan

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palerider
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Re: any advice greatly appreciated

Post by palerider » Mon Apr 18, 2016 4:04 pm

here's a couple threads that seem to be similar to what happens to you, but to a lesser degree.

http://freecpapadvice.com/forum/viewtop ... =10&t=2137

http://freecpapadvice.com/forum/viewtop ... =19&t=2178

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sue60
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Re: any advice greatly appreciated

Post by sue60 » Sun Apr 24, 2016 9:17 am

Hello again,

I've been reading alot this week and I see my doc on Friday. My AHI is still erratic despite trying some things. I scanned 2 months of numbers to bring to the doc- at most-25% of the time is my AHI under 5- http://imgur.com/a/CiJzB
I did this because she only looks at the bar graphs with Resmed and sees nothing wrong until I point it out?

Last night http://imgur.com/a/CiJzB AHI 29- the total time in apnea was 1 hour and 7 minutes- kinda freaks me out, esp when numbers climb to 50 and total apnea time close to 2 hours. I usually wake to swollen eyes the next morning, I think as if being strangled all night, tho other than some mild headache feel fine. The doc says in response to that observation- could be your kidneys. She seems to deny any association in my symptoms to the apnea. I still fall asleep on the couch every night sometimes up to 3 hours worth- that seems worse.

Anyway, I was thinking of calling an RRT at the insurance company who has been nice on the phone, just to ask him what the policy is for requesting a bipap or asv- does 4 months of data suffice? Ask specifically what the criteria is for getting those machines, as apparently it can vary insurance to insurance.

Would they require another sleep study which might not be representative of the problem as 25% of the nights I have good numbers with no changes.

Also, would it be unreasonable to ask the doc to order an MRI of the brain, I know some folks can have a mini stroke and never know it. Thanks again for any input-

Susan
Last edited by sue60 on Sun Apr 24, 2016 5:21 pm, edited 1 time in total.

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Wulfman...
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Re: any advice greatly appreciated

Post by Wulfman... » Sun Apr 24, 2016 2:39 pm

When I click on those links I get.......

Zoinks! You've taken a wrong turn.

Indicating the links don't work.


Den

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sue60
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Re: any advice greatly appreciated

Post by sue60 » Sun Apr 24, 2016 3:43 pm

Sorry, don't know how I messed that up- I should have coffee before i try to post -all images are here

http://imgur.com/a/CiJzB