Free CPAP Advice and Sleep Apnea Treatment Help Board • View topic - New & need help understanding
FAQ
It is currently Wed Apr 24, 2019 1:07 pm

Click this Affiliate Link to Support FreeCPAPAdvice when buying from Amazon. Easiest way to support us!

Please consider a small PayPal donation to FreeCPAPAdvice.com above, or using the Amazon Shopping link above when you purchase through Amazon. Thank you so much for your support!



Author Message
medmess
Unread post  Post subject: New & need help understanding  |  Posted: Thu Jan 10, 2019 7:03 pm

Joined: Thu Jan 10, 2019 8:50 am
Posts: 7
PAP Mask: PR Dreamwear (full face)
PAP Machine: PR Dreamstation Auto CPAP
Humidifier: PR Dreamstation Heated Humidifier (with heated tubing)
Pressure Setting: 4-20

Offline
Hi everyone. This is my first post after much lurking and learning, but my head is spinning with all of the new info so I'm hoping you can help me get a handle on what I'm seeing. My background ... I'm a 36yr old female, BMI of 26. My road to diagnosis was messy and not optimal. I presented with excessive daytime sleepiness and was given a home sleep test which came back "inconclusive" or "negative" (I mention both because I've been told both which I find confusing, but maybe it makes sense to someone here). My doctor then spent 6 weeks fighting with my insurance company to get an in-lab sleep study approved but was unsuccessful, so they sent me home with a second home sleep test. That test showed an AHI of 11 and 02 dropping to the low 80s. With that result, my doctor again tried fighting with my insurance company to get an in-lab study approved and again we were declined. So he went ahead and prescribed a CPAP, wide open at a pressure range of 4-20 (which I know you guys frown upon). I've had the CPAP since December 26th and have worn it every night except one, each night wearing it anywhere from 4 to 9 hours depending on the night. I've tried 3 different masks over the last few weeks and settled on the Dreamwear full face. I typically have a good leak rate. I don't feel any different yet and I know that takes time, but my AHI is all over the place so I'm guessing my settings aren't right. AHI since I got my CPAP has ranged from 6 on my best night to almost 19 on my worst night, and it's been up and down. I've tried asking both my doctor's office and the DME for guidance and both just sort of dismissed me. I've just reached my point of frustration ... why am I bothering with a wide open machine that isn't helping me? It's a waste of my time and money to have & use this thing if my doc/DME won't help me use it in a manner that is actually therapeutic.

I've attached a recent graph of a more typical night (not best or worst). I'm sorry that this was long and all over the place. And I'm sorry if I made any faux pas when posting. I'm just exhausted and feel very alone and defeated right now. I'm really hoping you guys can help me make sense of all of this and how I should proceed. My first CPAP follow-up with my doctor is on 1/29 btw, so I haven't given up on seeking help from them ... just hoping for some guidance from you in the meantime. If you made it through all that, God bless ya and thanks for your help!


Attachments:
screenshot-20190110-104835.png
screenshot-20190110-104835.png [ 233.46 KiB | Viewed 1044 times ]
Top
LSAT
Unread post  Post subject: Re: New & need help understanding  |  Posted: Thu Jan 10, 2019 8:01 pm

Joined: Tue Sep 05, 2017 9:40 am
Posts: 350
Location: WI
PAP Mask: Simplus
PAP Machine: S9 Autoset
Humidifier: H5i
Pressure Setting: 12-20

Offline
Without getting too technical, I would start by increasing your minimum pressure...Go to 7 for a few days and see how the AHI drops. You may have to increase again to about 9 to maximize your therapy.


Top
medmess
Unread post  Post subject: Re: New & need help understanding  |  Posted: Thu Jan 10, 2019 8:16 pm

Joined: Thu Jan 10, 2019 8:50 am
Posts: 7
PAP Mask: PR Dreamwear (full face)
PAP Machine: PR Dreamstation Auto CPAP
Humidifier: PR Dreamstation Heated Humidifier (with heated tubing)
Pressure Setting: 4-20

Offline
Is there a video somewhere that shows me how to change the pressures myself?


Top
diamaunt
Unread post  Post subject: Re: New & need help understanding  |  Posted: Thu Jan 10, 2019 8:25 pm
User avatar

Joined: Wed Mar 02, 2016 2:26 am
Posts: 2326
Location: Dallas(ish)
PAP Mask: Resmed P10
PAP Machine: Resmed S9 vpap auto
Pressure Setting: 18/13-25/19

Offline
medmess wrote:
Is there a video somewhere that shows me how to change the pressures myself?

There are, but I *strongly* suggest you head over to the link at the top of the page at apneaboard.com, and follow the instructions in section 3 about how to request the secret clinical manual for your machine by email.

It's got, not only the instructions on how to get to the hidden menus, but, what all the settings mean, as well as other good info.

_________________
Sleepyhead Info
How to format your charts


Top
medmess
Unread post  Post subject: Re: New & need help understanding  |  Posted: Sat Jan 12, 2019 10:26 am

Joined: Thu Jan 10, 2019 8:50 am
Posts: 7
PAP Mask: PR Dreamwear (full face)
PAP Machine: PR Dreamstation Auto CPAP
Humidifier: PR Dreamstation Heated Humidifier (with heated tubing)
Pressure Setting: 4-20

Offline
I increased my minimum pressure to 7 and here are the charts for my last two nights at the new min pressure. I feel like there's no rhyme or reason to this ... my events are all over the place. Any suggestions?


Attachments:
File comment: Friday night
screenshot-20190112-122121.png
screenshot-20190112-122121.png [ 234.99 KiB | Viewed 1005 times ]
File comment: Thursday night
screenshot-20190112-122058.png
screenshot-20190112-122058.png [ 227.93 KiB | Viewed 1005 times ]
Top
Pugsy
Unread post  Post subject: Re: New & need help understanding  |  Posted: Sat Jan 12, 2019 11:30 am
User avatar

Joined: Wed Aug 02, 2017 8:01 pm
Posts: 1082
PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirSense 10 AutoSet for Her
Humidifier: ResMed AirSense 10
Pressure Setting: Depends on the machine as I actually have more than one

Offline
Any chance you were sleeping on your back when all the ugly stuff happened Friday night at the beginning of the night?


Top
medmess
Unread post  Post subject: Re: New & need help understanding  |  Posted: Sat Jan 12, 2019 12:13 pm

Joined: Thu Jan 10, 2019 8:50 am
Posts: 7
PAP Mask: PR Dreamwear (full face)
PAP Machine: PR Dreamstation Auto CPAP
Humidifier: PR Dreamstation Heated Humidifier (with heated tubing)
Pressure Setting: 4-20

Offline
Pugsy wrote:
Any chance you were sleeping on your back when all the ugly stuff happened Friday night at the beginning of the night?


Yes, that's possible. I'm not normally a back sleeper, but I was having sinus issues last night and it was easier to breathe lying on my back as I was falling asleep. I'm typically a side sleeper.

So if we throw out that first part for back sleeping, what does that leave us with? Do I keep plugging away or make further adjustments?


Top
Pugsy
Unread post  Post subject: Re: New & need help understanding  |  Posted: Sat Jan 12, 2019 8:32 pm
User avatar

Joined: Wed Aug 02, 2017 8:01 pm
Posts: 1082
PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirSense 10 AutoSet for Her
Humidifier: ResMed AirSense 10
Pressure Setting: Depends on the machine as I actually have more than one

Offline
Even if we threw out the ugly cluster....there's still too much obstructive stuff going on to suit me.
If it were me...I would continue with the pressure increases in hopes to get a more optimal pressure that holds the airway open better and prevents that obstructive stuff from happening. For some reason whatever is going on the machine isn't increasing like we would expect it to.
So something is missing to keep it from responding in a manner we would expect it to respond with all see see getting flagged.

The first thing though...make sure those flagged events are real and not related to awake breathing irregularities getting flagged by mistake.
That might account for some of the lack of typical response we are seeing.
Go here and learn how to zoom in and decide if the event is real meaning you were really asleep...or not.
http://freecpapadvice.com/sleepyhead-free-software

On your back...that ugly cluster was most likely the real deal...and the machine tried its best to deal with it...other times in the night it isn't even trying and it should and I wonder why it isn't trying very hard.

There's also a possibility that we are seeing a combination of real obstructive stuff going on and some not real stuff caused by arousals but the arousals were caused by the real stuff. Catch 22 situation.

So...more minimum pressure again...and also start looking at those flagged events to try to decide if they are real as in asleep or not real.


Top
medmess
Unread post  Post subject: Re: New & need help understanding  |  Posted: Sun Jan 13, 2019 7:58 am

Joined: Thu Jan 10, 2019 8:50 am
Posts: 7
PAP Mask: PR Dreamwear (full face)
PAP Machine: PR Dreamstation Auto CPAP
Humidifier: PR Dreamstation Heated Humidifier (with heated tubing)
Pressure Setting: 4-20

Offline
Thanks Pugsy. I have been trying to look closely at the zoomed-in data, but I need to watch that video a few more times because I'm not completely confident that I know what I'm seeing. All I know for sure is that CPAP is not working for me right now, despite my best efforts to make it work. Last night was also a hot mess (see attached chart).

I'll increase the min pressure again tonight and see what happens.


Attachments:
screenshot-20190113-094943.png
screenshot-20190113-094943.png [ 230.83 KiB | Viewed 974 times ]
Top
Pugsy
Unread post  Post subject: Re: New & need help understanding  |  Posted: Sun Jan 13, 2019 8:55 am
User avatar

Joined: Wed Aug 02, 2017 8:01 pm
Posts: 1082
PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirSense 10 AutoSet for Her
Humidifier: ResMed AirSense 10
Pressure Setting: Depends on the machine as I actually have more than one

Offline
From the looks of last night's graph...I suspect you are ending up more on your back than you realize.
There might be some REM involvement but usually time in REM isn't that prolonged but it wouldn't be impossible for REM to also be a factor.

If my report...I would still be increasing the minimum...you need to get to a baseline where the machine can get to where it needs to be in a timely manner to deal with whatever is causing those events.
You have to give it a better head start. It just can't respond fast enough..

I suspect you are going to need close to 10 minimum at least..
to get the machine to a point where it can better hold the airway open and not let the airway collapse from whatever is causing it to collapse.
I could suggest going to extra ordinary measures to stay off your back but that's easier said than done and often comes at the cost of messing with our sleep quality.
I prefer to just find the point where the machine can do a better job in the first place and sleep in any position I want if I can.

These auto adjusting machines...they do their best job when preventing something from ever happening in the first place instead of continually trying to fix something after the fact.
Get the baseline high enough to prevent most collapses and high enough so the machine can get to where it needs to go in a timely manner for the outlier stuff that needs more pressure.
They simply can't go higher fast enough...it takes minutes to go up and and down...and often the airway collapses and then opens back up while the machine is going up or down. We have to start the minimum higher in the first place...

This is especially true of the Respironics auto adjusting machines.
The response time is simply slower.
ResMed has a faster response time but even those machines require that we often have a higher minimum as a better head start. They can't go from 7 to 15 in the blink of an eye either.

If you can handle a big jump in minimum...maybe use ramp to help you out...try 10 minimum and see what happens.
If you can't handle a big jump...keep adding 1 cm increases to the minimum every 2 or 3 days if you can...work up slowly if you have to.


Top
medmess
Unread post  Post subject: Re: New & need help understanding  |  Posted: Mon Jan 14, 2019 6:42 am

Joined: Thu Jan 10, 2019 8:50 am
Posts: 7
PAP Mask: PR Dreamwear (full face)
PAP Machine: PR Dreamstation Auto CPAP
Humidifier: PR Dreamstation Heated Humidifier (with heated tubing)
Pressure Setting: 4-20

Offline
I tried a min of 10 last night. It seems like the first part of the night wasn't awful, but I couldn't settle back in after getting up at 3am and ultimately removed the mask around 4am. Even if you throw out the last hour, my AHI was still 6.42. I feel like I'm chasing a unicorn here. :(

Graph attached.


Attachments:
screenshot-20190114-083458.png
screenshot-20190114-083458.png [ 230.76 KiB | Viewed 929 times ]
Top
Pugsy
Unread post  Post subject: Re: New & need help understanding  |  Posted: Mon Jan 14, 2019 8:06 am
User avatar

Joined: Wed Aug 02, 2017 8:01 pm
Posts: 1082
PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirSense 10 AutoSet for Her
Humidifier: ResMed AirSense 10
Pressure Setting: Depends on the machine as I actually have more than one

Offline
Well... an AHI of 6 is better than an AHI of 12.

Give yourself 2 or 3 more nights at 10 minimum just to get better adjusted and sleeping better...then see if it's still running in the 6 ish range...if it is...a little more minimum again.


Top
celestemcc
Unread post  Post subject: Re: New & need help understanding  |  Posted: Mon Jan 14, 2019 11:11 am

Joined: Sat Jan 05, 2019 11:44 am
Posts: 21
PAP Mask: Dreamwear Nasal
PAP Machine: Dreamstation APAP
Humidifier: Attached to Dreamstation
Pressure Setting: 6 - 15

Offline
If you're using a Dreamstation APAP, here's a video on how to change the settings yourself: https://www.youtube.com/watch?v=84LkXFETkt8


Top
medmess
Unread post  Post subject: Re: New & need help understanding  |  Posted: Thu Jan 17, 2019 6:56 am

Joined: Thu Jan 10, 2019 8:50 am
Posts: 7
PAP Mask: PR Dreamwear (full face)
PAP Machine: PR Dreamstation Auto CPAP
Humidifier: PR Dreamstation Heated Humidifier (with heated tubing)
Pressure Setting: 4-20

Offline
Well, here's a new twist ... I was struggling with a min of 10 so I dropped it back down to a min of 7 to help me get used to it ... and my AHI improved last night, plus no runaway pressures to wake me up! The pressure stayed under 10 all night long. I'm a bit confused by it, but I'll take it. I actually slept for 5 hours straight!

It's just a theory, but I'm starting to think the higher pressures were causing me to roll onto my back because I have less leaks that way, but being on my back was causing more apneas. Like I said before, I don't normally sleep on my back, but I have noticed that when the pressures get high, the mask starts making that awful air leak noise and then I roll onto my back to make it stop. I don't know ... it's just a thought.

Here's last night's chart if anyone has input. My doctor is pretty much ignoring my requests for guidance (I've called & emailed multiple times) so you guys are all I've got in terms of advice. I think I'm firing my doctor soon!


Attachments:
screenshot-20190117-084550.png
screenshot-20190117-084550.png [ 229.19 KiB | Viewed 849 times ]
Top
Display posts from previous:  Sort by  
Print view

Who is online
Users browsing this forum: No registered users and 3 guests
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum
Jump to:  
cron

Delete all board cookies | The team | All times are UTC - 8 hours [ DST ]

Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group
DAJ Glass 2 template created by Dustin Baccetti
id="Mask Bright" style="width:728px;margin:auto;float:center";z-index:8">