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Aargh! (help!) - not feeling better on APAP
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mraley82 Offline

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Posts: 6
Joined: Jul 2013

Machine: resmed s9
Mask Type: Full face mask
Mask Make & Model: unsure
Humidifier: h5i
CPAP Pressure: 5-20
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #1
Gross Aargh! (help!) - not feeling better on APAP
I am sure there may be something more I could read but I am so extremely frustrated I am hoping someone can help. Basically the VA diagnosed me with sleep apnea after a home sleep study. I don't remember those results because they never even let me see them or understand them. They put me on a resmed s9 apap (auto cpap - still learning apnea lingo). I was given the machine and told I'd have a follow up appointment with a local sleep center in the future. It's been almost 3 months now.

I downloaded a couple of programs to view what my machine has been recording and its confusing to say the least. Some nights I may only have an AHI of 5.0 or less while other nights it may be 5 to 20. Pressure could be 5 or it could be around 12. Leaks are usually 15ml, I'm thinking a lot of that is due to that I fall asleep on my side and they gave me a full face mask, which when I asked the VA if I needed a larger size mask they said "sure" and gave me a medium sized mask which leaks even more. (Went back to small)

Reviewing my data I see sometimes where i have very minimal events or none at all for 30 minutes to an hour then for maybe an hour I have events constantly. Majority are central/open airway and very very few are ever obstructed. I will have 3-4 breathes in/out then nothing for usually 10-15 seconds, and this repeats sometimes for an hour or so then stops then reoccurs sporadically through the night.

I don't feel any more or less rested, tired, moody, grumpy, memory and concentration issues, etc. I'm at wits end with this and would really appreciate any insight on what's going on. To top it off I have sporadic insomnia so I don't end up using the machine because I can't fall asleep in my bed and for some reason I only can on the couch. The VA prescribed me something twice for this but it didnt help.

I read something about a medicine online about daytime sleepiness resulting from sleep apnea but they were clueless what I was talking about. Basically anything I've learned about my sleep apnea has been on my own research and none by a doctor or someone who knows more about this condition. So, any help would be greatly appreciated!
08-11-2013 11:23 PM
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Paptillian Offline

Preferred Members-2

Posts: 474
Joined: Jun 2013

Machine: S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: H5i
CPAP Pressure: 4 - 10, EPR x2
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Pennsylvania, USA

Post: #2
RE: Aaarrrrgggghhhh!!! (help!?!)
(08-11-2013 11:23 PM)mraley82 Wrote:  Basically anything I've learned about my sleep apnea has been on my own research and none by a doctor or someone who knows more about this condition. So, any help would be greatly appreciated!

Hi mraley82,

Most of us aren't sleep doctors on here either, but you're in a good place for support.

Do your central apneas correspond with high leak rates or high pressures on your graphs? A pressure of 12 is on the higher end of the spectrum and could trigger some of those events for some folks, especially if you haven't been using it for a long time.

From what I know a nasal mask is preferred to start with. Did they tell you that you require a full face mask for some reason? Are you a mouth breather and have trouble keeping your mouth closed at night with the CPAP on? If not then you may want to think about trying a nasal mask. If you can use it, it'll have a better chance of sealing well.
08-11-2013 11:36 PM
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Paptillian Offline

Preferred Members-2

Posts: 474
Joined: Jun 2013

Machine: S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: H5i
CPAP Pressure: 4 - 10, EPR x2
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Pennsylvania, USA

Post: #3
RE: Aaarrrrgggghhhh!!! (help!?!)
By the way, here's a thread that talks about how to get a good mask fit/seal. Contrary to what many folks have a tendency to do, a lot of masks seal better when they are looser as opposed to tighter. Most full face masks are designed to float on the face while the pressure creates the seal. The purpose of the strap is just to keep them in place (not to cinch them down).

http://www.apneaboard.com/forums/Thread-...GUARANTEED
(This post was last modified: 08-11-2013 11:54 PM by Paptillian.)
08-11-2013 11:46 PM
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vsheline Offline

Advisory Members

Posts: 1,907
Joined: Jul 2012

Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
Mask Type: Full face mask
Mask Make & Model: F10 or SimPlus w/ 2Liners. MirageQuatro & Gecko gel pad
Humidifier: H5i
CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #4
RE: Aaarrrrgggghhhh!!! (help!?!)
(08-11-2013 11:23 PM)mraley82 Wrote:  Reviewing my data I see sometimes where i have very minimal events or none at all for 30 minutes to an hour then for maybe an hour I have events constantly. Majority are central/open airway and very very few are ever obstructed. I will have 3-4 breathes in/out then nothing for usually 10-15 seconds, and this repeats sometimes for an hour or so then stops then reoccurs sporadically through the night.

Hi mraley82, welcome to the forum!

If the central apneas aren't lasting longer than about 20 seconds, I think it probably is not cause for great concern.

So I wouldn't let myself get too anxious about it, but obviously you should work to reduce or eliminate the many central events.

Sounds like you may be describing Cheyne-Stokes Respiration. You can google it or read about it here (but, again, don't let yourself get overly worried about this):
http://en.wikipedia.org/wiki/Cheyne-stokes_respiration

I suggest you use ResScan to print out full reports, showing the whole night in the upper set of detailed graphs, and, in the lower set of detailed graphs, zooming into a 10 or 30 minute period when the central events are occurring back-to-back. I would print reports for about 5 of the worst nights to give to the doctor for his records, or email the reports to him in pdf format. Be sure to include the Flow plot and the High Rate Pressure plot. Heck, you can include plots of everything in the reports.

Discuss these reports with your doctor and ask to be given a titration with an ASV machine, and after the ASV titration ask to receive an ASV machine such as the S9 VPAP Adapt (Model# 36037 not older model 36007) or the Philips Respironics System One DS960TS BIPAP autoSV Advanced. (Try to not accept a standard bi-level machine, because if you have CSR I think you should qualify for an ASV class bilevel machine.)

Your present machine (S9 AutoSet) is increasing the pressure up to 12 when it needs to, to avoid obstructive events, and it is doing that very well. The S9 AutoSet can detect CA events but will do nothing to treat them.

ASV machines will immediately (breath-by-breath) boost the pressure during inhale to keep you well ventilated even when you stop trying to breath. If you don't start inhalation on your own, it will start it for you, and it will keep you ventilated by alternately increasing the pressure (to cause inhale) and decreasing the pressure (to cause exhale) until you are breathing on your own again.

You may hear that ASV machines can be hard to get used to, which is somewhat true. Basically, you may need your exhale pressure (EPAP) to be as high as 12 to prevent obstructive events, for example, and when you stop trying to breathe you may need the inhale pressure (IPAP) to automatically raise itself about 10 higher than that, which would be 22, for example. These high pressures make controlling leaks the main challenge. But if we need it, we need it, and we can deal with it and get used to it.

An alternate thing to try before getting an ASV machine would be to wear a snug teeshirt to bed with a tennis ball or two in pocket sewn right between the shoulder blades, to keep you off your back. This may lower how much pressure your machine needs to use to prevent obstructive events, and sometimes central events occur mostly only while the pressure is high. So making sure you stay off your back may keep the pressure lower and reduce the frequency of central events.

Another thing you can try with your present S9 AutoSet would be to turn EPR down or off, because it is pretty common that folks who have central events often will have fewer if EPR is reduced or turned off.

Good luck and take care,
--- Vaughn

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 08-12-2013 01:40 AM by vsheline.)
08-12-2013 01:00 AM
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mraley82 Offline

Members

Posts: 6
Joined: Jul 2013

Machine: resmed s9
Mask Type: Full face mask
Mask Make & Model: unsure
Humidifier: h5i
CPAP Pressure: 5-20
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #5
RE: Aaarrrrgggghhhh!!! (help!?!)
(08-11-2013 11:36 PM)Paptillian Wrote:  
(08-11-2013 11:23 PM)mraley82 Wrote:  Basically anything I've learned about my sleep apnea has been on my own research and none by a doctor or someone who knows more about this condition. So, any help would be greatly appreciated!

Hi mraley82,

Most of us aren't sleep doctors on here either, but you're in a good place for support.

Do your central apneas correspond with high leak rates or high pressures....

Did they tell you that you require a full face mask for some reason? Are you a mouth breather and have trouble keeping your mouth closed at night with the CPAP on?

The leaks don't usually correspond with anything out of the ordinary, is it possible to upload a file so someone can review it and/or screen shot of the results?

Also, the VA asked if I ever breathe with my mouth at night and I said that I'm sure I do, so they gave me the face mask.
08-12-2013 07:12 AM
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PaulaO2 Offline
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Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #6
RE: Aaarrrrgggghhhh!!! (help!?!)
How to do attachments:
http://www.apneaboard.com/forums/Thread-How-to-Attachments

Also, in the future, make your subject line more specific as to the type of help you need. That way the folks with the answer can help.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-12-2013 09:30 AM
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SuperSleeper Offline

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Posts: 9,961
Joined: Feb 2012

Machine: PR System One REMstar Auto (DS560)
Mask Type: Nasal pillows
Mask Make & Model: ResMed Mirage Swift II
Humidifier: none
CPAP Pressure: 12.5 - 18.5 cmH20 (auto range)
CPAP Software: SleepyHead

Other Comments: Have diabetes Type II

Sex: Male
Location: Illinois, USA

Post: #7
RE: Aargh! (help!?!) - not feeling better
I changed the thread title a bit.

SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.

08-12-2013 09:47 AM
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trish6hundred Offline

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Posts: 6,430
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #8
RE: Aargh! (help!) - not feeling better on APAP
Hi mraley82,
WELCOME! to the forum.!
Hang in there for more responses to your post.

trish6hundred
08-12-2013 10:13 AM
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mraley82 Offline

Members

Posts: 6
Joined: Jul 2013

Machine: resmed s9
Mask Type: Full face mask
Mask Make & Model: unsure
Humidifier: h5i
CPAP Pressure: 5-20
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #9
RE: Aargh! (help!) - not feeling better on APAP
(08-11-2013 11:46 PM)Paptillian Wrote:  By the way, here's a thread that talks about how to get a good mask fit/seal. Contrary to what many folks have a tendency to do, a lot of masks seal better when they are looser as opposed to tighter. Most full face masks are designed to float on the face while the pressure creates the seal. The purpose of the strap is just to keep them in place (not to cinch them down).

Thanks for providing the thread, it had a lot of useful information. When I was given the mask they showed me how to put it on but said nothing about adjusting it properly. I've been tightening the straps when it leaks, which is obviously not always the thing to do. I'm not at home right now and I forget the brand of mask I have but there's a dial on the forehead piece to make adjustments, any insight on how this should be done? Luckily the bottom straps disconnect so I don't have to completely readjust everytime I use it - I've seen some other head gear that didn't have this so I guess I got a good mask.

I have a SMALL and MEDIUM mask, the medium mask seemed to leak more but felt more comfortable. I have major OCD when I try to get to sleep... sheets have to be pulled tight, pillow positioned just right, room temperature cold (freeze out my wife), etc. The air vents on the upper part of the mask sometimes blow air into my pillow so then I'm adjusting to get it to stop. Sometimes I feel a very small leak around the bridge of my nose which I've ripped the mask off in the middle of the night because it annoys me so bad.

What's an "acceptable" nightly leak rate? At what point should I be able to know I've made the correct adjustments?
08-12-2013 06:48 PM
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mraley82 Offline

Members

Posts: 6
Joined: Jul 2013

Machine: resmed s9
Mask Type: Full face mask
Mask Make & Model: unsure
Humidifier: h5i
CPAP Pressure: 5-20
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #10
RE: Aaarrrrgggghhhh!!! (help!?!)
(08-12-2013 09:30 AM)PaulaO2 Wrote:  How to do attachments:

Also, in the future, make your subject line more specific as to the type of help you need. That way the folks with the answer can help.

Okay, I'll upload a file so someone with more knowledge see what's going on when I'm sleeping. Sorry about the subject line, I was really frustrated last night. Perturbed Oops
08-12-2013 06:53 PM
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