FED UP with cpap...

I was dx with severe OSA ( ahi=49) on Aug 9. I was so excited when I left the sleep lab since I felt like a new person! The symptoms I was experiencing before I was diagnosed was severe depression, anxiety, and extreme fatigue just to name a few. I have a ResMed s9 cpap which has an auto setting on it. However, my doctor gave me a straight cpap airflow of 12 with a nasal mask and chin strap. Long story short, I realized I could not use the chin strap due to TMJ in my jaw. Plus the gas pains and bloating in my stomach was very painful. so he then (after taking 3 days to respond) put it on c-flex and a full face mask. This doc does not give me the option of what mask i can choose. He prescribes a certain one and thats all the choice I have. So I got a Mirage Quattro full face mask. The bloating went away for the most part but the stupid thing leaks. The size medium was too big and the small I have to tie so tight it is so uncomfortable. Anyway, I have changed doctors but cannot get in to see the new one until Sept 14. I have done everything possible to try to be complaint with this thing because I do want to get better! ( Please do not give me the spill about how it is illegal to change my own settings...i have heard enough of that junk from the DME)

So I have tried a straight pressure of 12...still sleepy all day that I can barely drive. pressure of 13...same thing. this is with no leaks. so last night I put it on auto with a low pressure of 12 and a high of 16. I slept all night but the leak rate said 6.0. tired today so just took an hour nap on that same setting...woke up with severe abdominal gas pains. pressure got up to 15.8 last night but not sure during my nap cause it was still showing last night. Im tired of being depressed and tired of being tired...tired of the anxiety with this whole thing... Now im messed up as far as getting a new mask since I have gone through two. I do not think i can get another one for three months....UGH

Glad you found us! Not to worry - nobody here is going to get on you about changing your own settings. In fact, we'll highly recommend that you obtain the software so that you can make full use of the data your machine provides.

Also, try not to worry about the mask issue. The mask is the hardest part of the whole thing, as you've discovered. But there is hope. There are tons of masks out there. All of the major manufacturers have a 30-day return program set up with the DMEs, so you can exchange masks as much as you need to. I would call your new doctor and ask if he'd be willing to write you a new mask prescription for "mask of patient's choice" now, before your appointment. If that doctor won't, you could also try asking your primary care doctor.

tmorris wrote:( Please do not give me the spill about how it is illegal to change my own settings...i have heard enough of that junk from the DME)

You won't here it from me. First thing I did was change my pressure after I saw my software reports.

Let's get to work on fixing your problems. We need to see some reports. You can feel better. We know that by the tiration study and how you felt afterwards.

tmorris wrote:I slept all night but the leak rate said 6.0

Where are you getting this number? You mention CFlex so I assume Respironics machine. Since you see leak you have full data machine. Do you have the software?
If not here are your choices.
viewtopic.php?f=1&t=64906&st=0&sk=t&sd= ... re+options

Please go to your profile and permanently add your equipment so we know exactly what you are using. Sounds like APAP with your reported pressure range. Is it like mine..see my link in my profile?
How to add your equipment to your profile explained here if you don't know how.
viewtopic.php?f=1&t=64906&st=0&sk=t&sd= ... re+options

tmorris wrote:( Please do not give me the spill about how it is illegal to change my own settings...i have heard enough of that junk from the DME)

The only time we talk about "how it is illegal to change our own settings" is to poke fun at those who keep feeding us that line ...

If you need advice on HOW to change those settings---in the sense of what settings to try as well as the more mundane instructions for getting into the clinician's menu, just ask. And a friendly soul or two will be sure to help.

So I have tried a straight pressure of 12...still sleepy all day that I can barely drive. pressure of 13...same thing. this is with no leaks. so last night I put it on auto with a low pressure of 12 and a high of 16. I slept all night but the leak rate said 6.0. tired today so just took an hour nap on that same setting...woke up with severe abdominal gas pains. pressure got up to 15.8 last night but not sure during my nap cause it was still showing last night. Im tired of being depressed and tired of being tired...tired of the anxiety with this whole thing... Now im messed up as far as getting a new mask since I have gone through two. I do not think i can get another one for three months....UGH

First things first: Do you have a Resmed S9 Autoset (You mention a ResMed s9 cpap with Auto) or do you have a Philips Resprionics System One Auto CPAP with A-Flex (you mention c-flex)? Get that straightened out and take the time to add this info to your signature. Click here for instructions on registering your equipment.

Next, the MASK is a critical element in making this crazy therapy we're all stuck with work. And you've had a string of bad luck in the mask department. You were right to get another doc. You might try calling the new doc's office and asking if s/he would be willing to re-write the script so that it reads: Mask (Nasal Interface) of patient's choice. Or even call your PCP to see if s/he would re-write the script for you.

Third, the severe abdominal pain is called aerophagia and it plagues many of us. Do a search for the word aerophagia[/i] and you'll get lots of ideas on how to try to manage it. I'll throw in that you should consider keeping a sleep log just to document how often and how severe the aerophagia hits you. Try some GERD self-help tips. There's apparently a strong connection between aerophagia and GERD and silent GERD. And play with the EPR/C-Flex on your machine. For some folks, finding the right EPR/C-Flex setting goes a long way in addressing aerophagia. (And like so many things, some people need NO EPR/Flex, others need it maxed out, and some need it in-between to manage the aerophagia.) For some folks, starting with a lower (not completely therapeutic) pressure that is tolerable and slowly increasing the pressure up every few days or so until you reach your full pressure setting can help get over the hump.

And if your aerophagia is sufficiently severe and persists through several efforts to manage it, you and the new doc may want to consider switching you to a bilevel machine. Some people do get switched to bi-level machines simply as a way of managing aerophagia. For some of us, the switch to bi-level is a godsend. For others, it's not. Note, however, getting a bi-level machine requires a different prescription than the one that got you the CPAP/APAP machine.

Finally a word of encouragement to keep working at making CPAP work for however long it takes. There is nothing natural about sleeping with a six foot hose attached to your nose every night. And some of us have a steeper learning curve than average. So it takes us more hard work and more time before we start to feel a positive difference in our life from xPAP. And a few unlucky ones, like myself, go through a long period of feeling much, much worse before we start to feel better. It's hard to be patient when you're feeling sooooo bad, but patience, persistence, and a willingness to take putting on the mask every night is what it takes to make this therapy work for us.

Thank you for all of your responses! I know how to add my machine but im new to this...I was not sure which one in the list is mine...I have the phamplet that came with it in front of me. It says ResMed at the top then under that is lists Autoset, Elite, Escape Auto, Escape, H5i and the series is S9. I have no software yet. I can tap into clinicians mode and see if it leaked or not which 6.0 sounds like a high leak rate to me. I doubt this doc will give me a prescription for a mask without seeing me first but I will try. Im changing DME's too since they wont let me get another mask without paying for it...i have been screwed every way around on this one....will try again tonight

tmorris please check the links under my avatar to the left

tmorris wrote:Thank you for all of your responses! I know how to add my machine but im new to this...I was not sure which one in the list is mine...I have the phamplet that came with it in front of me. It says ResMed at the top then under that is lists Autoset, Elite, Escape Auto, Escape, H5i and the series is S9. I have no software yet. I can tap into clinicians mode and see if it leaked or not which 6.0 sounds like a high leak rate to me. I doubt this doc will give me a prescription for a mask without seeing me first but I will try. Im changing DME's too since they wont let me get another mask without paying for it...i have been screwed every way around on this one....will try again tonight

Does your machine say "AutoSet, Elite, Escape Auto, or Escape" next to the power button?

Is it shaped like the picture of an S9 below?

It says Autoset above the power button and EPR below it...it does look much like the picture

tmorris,
You sure came to the right place LOL!
No one here will tell you it's illegal to change your settings.............. BECAUSE IT'S NOT.

Hang in there, and around here - you'll be glad you did.

Cheers,
xena

tmorris wrote:It says Autoset above the power button and EPR below it...it does look much like the picture

Congratulation, you have an S9 AutoSet, an excellent machine. Lots of people get screwed by getting a lesser machine that doesn't collect data.

tmorris wrote:It says Autoset above the power button and EPR below it...it does look much like the picture

Then congratulations: You've got a Resmed S9 AutoSet machine---one of the nicest, full efficacy data machines on the market with a ton of other info available from that LCD once you go into the clinicians menu and turn Sleep Quality to ON instead of Usage!

UGHHH...I have had enough with this mask. Im done, done, done....bridge of my nose scarred up and leaks all night. Im calling the doc today and telling them where they can put this mask...maybe i will hear back sometime this week! Im miserable.

Here is a recent thread with links to most of the ResMed Info you will need.
viewtopic/t67793/viewtopic.php?f=1&t=67 ... 12#p629761

Have you been able to try a nasal pillow mask at all?

Lizistired, not yet on the nasal pillows...my doc wont prescribe them for me but my new doc will . I just got the quattro FX today so we will see how tonight goes...although I just picked it up and signed for it...they did not even hook it to my machine. I guess I need a change in DME too!!

OMG!!! I can't believe a doctor would REFUSE to prescribe whatever the heck mask the wearer wants!!! Did you explain that it's YOU who's gonna be wearing this thing every night and not HIM/HER?

Wow!! My neuro encourages me to not only try other masks, but to build a bit of a 'wardrobe' so I can change at any time if one mask is just not working right.

Sheeesh..... thought I was over being flabbergasted at medical idiocy....


xena