Page 3 of 4
Re: UARS - Not benefitting from CPAP
Posted: Wed Aug 22, 2018 10:58 am
by Cpapian
Okaythen wrote: ↑Wed Aug 22, 2018 7:35 am
Thanks, Cpapian! I have a respironics. I need to do some investigating.
So you have the brand same as the one that woke me up! Previously, a fire truck could roll through my bedroom and I wouldn't wake up, but those pressure pulses that bugged me. One night I had 143 pressure pulses. If you are ultra sensitive (which is the complete opposite of me) I don't know how you can stand it.
I think it would help you if you post some sleepyhead charts, so forum members have something concrete to look at. Maybe they can make some suggestions that will help. Instruction links are below my equipment . Keep the screenshots in this thread, so your whole story is together.
Re: UARS - Not benefitting from CPAP
Posted: Wed Aug 22, 2018 11:00 am
by palerider
Okaythen wrote: ↑Wed Aug 22, 2018 7:35 am
Thanks, Cpapian! I have a respironics. I need to do some investigating.
You selected the respironics dreamstation "CPAP" model, which is junk.
Please check the label on the machine, and see if you've selected the right one, there are many different dreamstation machines, what's the REF number off the label?
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 10:47 am
by Okaythen
Cpapian wrote: ↑Wed Aug 22, 2018 10:58 am
Okaythen wrote: ↑Wed Aug 22, 2018 7:35 am
Thanks, Cpapian! I have a respironics. I need to do some investigating.
So you have the brand same as the one that woke me up! Previously, a fire truck could roll through my bedroom and I wouldn't wake up, but those pressure pulses that bugged me. One night I had 143 pressure pulses. If you are ultra sensitive (which is the complete opposite of me) I don't know how you can stand it.
I think it would help you if you post some sleepyhead charts, so forum members have something concrete to look at. Maybe they can make some suggestions that will help. Instruction links are below my equipment . Keep the screenshots in this thread, so your whole story is together.
Here are a few. I am not usually sleeping after 5 a.m. but keep the mask on.
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 10:48 am
by Okaythen
I believe my microarousals that are occurring while on CPAP are not obstructive related.
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 10:50 am
by Okaythen
palerider wrote: ↑Wed Aug 22, 2018 11:00 am
Okaythen wrote: ↑Wed Aug 22, 2018 7:35 am
Thanks, Cpapian! I have a respironics. I need to do some investigating.
You selected the respironics dreamstation "CPAP" model, which is junk.
Please check the label on the machine, and see if you've selected the right one, there are many different dreamstation machines, what's the REF number off the label?
It says Auto BiPap but I've been using it in straight CPAP mode. Would love to try another machine but my provider doesn't seem to have any other options.
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 11:19 am
by Julie
The pressure wants to be higher... is there a reason you haven't tried it at e.g. 9 or 10? It might get rid of all those hypopneas if nothing else.
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 11:21 am
by palerider
Okaythen wrote: ↑Fri Aug 24, 2018 10:50 am
palerider wrote: ↑Wed Aug 22, 2018 11:00 am
Okaythen wrote: ↑Wed Aug 22, 2018 7:35 am
Thanks, Cpapian! I have a respironics. I need to do some investigating.
You selected the respironics dreamstation "CPAP" model, which is junk.
Please check the label on the machine, and see if you've selected the right one, there are many different dreamstation machines, what's the REF number off the label?
It says Auto BiPap but I've been using it in straight CPAP mode. Would love to try another machine but my provider doesn't seem to have any other options.
Auto Bipap
is nearly
entirely different machine. It works way better than cpap mode.
Change it to auto bipap mode, minepap 7, minps 1, maxps 4, just leave maxipap set to the default.
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 11:28 am
by Okaythen
My doctor insists on a pressure of 7. I was at a pressure of 8 but was not any better.
I've been on autobipap. Doctor won't let me switch back. Nevertheless, I still wasn't any better.
I don't believe this is a breathing issue, except to say that it is if I were not on PAP, but I am so... Having microarousals in sleep all night long is either from the CPAP machine (hypersensitive to it) or limbic system impairment as seen in those with CFS.
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 1:01 pm
by palerider
Okaythen wrote: ↑Fri Aug 24, 2018 11:28 am
My doctor insists on a pressure of 7. I was at a pressure of 8 but was not any better.
I've been on autobipap. Doctor won't let me switch back. Nevertheless, I still wasn't any better.
Then there's nothing we can do for you.
Your machine isn't set well, and it's likely that your doctor isn't going to get it set well.
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 1:07 pm
by Okaythen
There probably isn't anything you can do, but I kindly welcome any suggestions. I was on auto BIPAP for a while at pressure 7/5. My stats were a little better, but my health was still atrocious. I've tried apap, BIPAP, and cpap, with my doctor settling on CPAP at a pressure of 7 due to the results of my titration.
Here's what he wrote to me when I asked him to switch me back over to BIPAP:
"Your breathing is not going to be better on bilevel.
Stop focusing on the breathing-its fine on CPAP."
What do you suggest?
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 1:22 pm
by palerider
Okaythen wrote: ↑Fri Aug 24, 2018 1:07 pm
There probably isn't anything you can do, but I kindly welcome any suggestions. I was on auto BIPAP for a while at pressure 7/5. My stats were a little better, but my health was still atrocious. I've tried apap, BIPAP, and cpap, with my doctor settling on CPAP at a pressure of 7 due to the results of my titration.
Here's what he wrote to me when I asked him to switch me back over to BIPAP:
"Your breathing is not going to be better on bilevel.
Stop focusing on the breathing-its fine on CPAP."
What do you suggest?
Minepap 7, minps 1 maxps 3 maxipap 25
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 1:42 pm
by Okaythen
Is there a way to adjust to autobipap manually, without my doctor's consent?
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 1:55 pm
by palerider
Okaythen wrote: ↑Fri Aug 24, 2018 1:42 pm
Is there a way to adjust to autobipap manually, without my doctor's consent?
Yes, you can get the secret manual by following the instructions at the top of the page on apneaboard.com.
Re: UARS - Not benefitting from CPAP
Posted: Fri Aug 24, 2018 2:25 pm
by chunkyfrog
palerider wrote: ↑Fri Aug 24, 2018 1:55 pm
Okaythen wrote: ↑Fri Aug 24, 2018 1:42 pm
Is there a way to adjust to autobipap manually, without my doctor's consent?
Yes, you can get the secret manual by following the instructions at the top of the page on apneaboard.com.
Not really much of a secret, if anyone asks.
You have the RIGHT to find settings that work better for you than the
one size fits all crap your bonehead doctor has stuck you with.
Doctors want you to think they are gods--but their feet are made of the same clay as ours.
Often their brains are no better . . .
Re: UARS - Not benefitting from CPAP
Posted: Sun Aug 26, 2018 8:41 am
by Okaythen
Thanks, everyone, for your help. I remain frustrated and despondent over my very poor health as a result of SDB. It's completely chaotic and I'm having a hard time hanging in there. I understand there are no miracle cures, but if anyone has found improvement through medications as an adjunct therapy, please do share your experience. Thanks.
PS Ordering the Airsense 10 Autoset just for the hell of it.