newbie frustration

reefdreamer wrote:...I am sure the dme company only gets frustrated with losing money on masks I can not use. Thanks,
Jen

Jen, I don't know what DME provider you are patronizing, but in my case, the city hospital who ran the sleep lab was and is, affiliated with the DME provider to whom I was "directed". When I returned my Swift, it was sterilized and sent to the sleep lab for more titrations.

Even if you are not using a DME provider with such an affiliation, I believe that the mask manufacturers have the 30-day return policy...and they are not charging such huge prices for the masks that they cannot cover the price from the profits. Sleep labs pay only a small portion of the mask price compared to consumers, such as we.

Jen, kudos to you for your investigations of the CPAP field. You are simply taking care of yourself by requiring masks to be acceptable to you. You also have a very exceptional DME provider. So, test all the masks that you need to test in order to find one that delivers treatment in the most comfortable way for YOU.

It always amazes me that there are so many different masks, with so many new features. It also amazes me that the older masks were not always better. Each of us is different in preferences, anatomy, physiology, and insurance policies. The mask is probably the single most important thing in 'complying' with treatment for someone new to the whole CPAP world.

Keep doing what you are doing; it is simply taking care of yourself, and taking charge of your treatment.

Karen,
Who has bought more masks for herself than her insurance company

reefdreamer wrote:Thanks everyone for the advice. I am still battling issues. I turned down the humidity to a 1 and tried the F&P 431 and had another flood in the mask of whatever it is (drool or whatever it is) and the mask leaked all night like crazy no matter how tight I made the thing. So went back to the ultra mirage and trying to rig it up to work good. I am not going to force myself to breath though a nose that doesn't work, I am just to comfortable with mouth breathing and if I try to not mouth breath and breath through a clogged up nose it just does not work. I am sure the dme company only gets frustrated with losing money on masks I can not use. Thanks,
Jen

I think you're on the right track. When first beginning, just do what you have to do to stay 100% compliant. That will help your mind and body get used to therapy. It is counterintuitive, but the tighter the mask the less effective it is and the more likely it is to leak. You've probably read that here before. Just in case, make certain you adjust your mask while you are lying down, in your sleeping position. If you do it when standing or sitting, and then lie down, your face changes shape the the adjustments you did may not work.

The DMEs probably get reimbursed by the 30 day warranty that the mask manufacturer's give them. If you are returning masks, don't forget to keep track and than see that your insurance and your copay are not being charged.

One last thought, before I was on APAP, I breathed through my mouth and my nose was too stuffy all the time to breath through it. I didn't feel like I got enough air through my nose. Since being on APAP for a year, I no longer breath through my mouth (primarily) and my nose is clear. Using the Neti Pot has really helped keep my nasal passages clear and open. I think that and using my nose has returned it to full function.

I too, have chronic sinus problems. As this is hay fever season for me ... things aren't the easiest since I opted for using nasal pillows.

Reading through the forum led me to dig out my neti pot after years of neglect. Once again, the solution just kind of sat there and not flow out the other nostril like it's supposed to. I ended up choking on it. Maybe I'm not using it right, or maybe I'm just way too congested for it to work right.

I ended up getting the squirt bottle thingy and it seems to be working out better. I feel cleaning and more clear for the most part.

One strange thing though ... after using the solution and blowing my nose to get rid of all the gunk ... I keep smelling ammonia, or at least feeling like I'm smelling it. What's that smell coming from and how do I get rid of it?

One month on cpap and feeling less tired during the day. One day at a time, right?

No help on the ammonia odor....I have never had that issue with a neti-pot. What is the spray thingie you're referencing?? The Neti-spray??

Happy to hear you're hanging in there -- and yes!!! It is one day at a time!!!!
Keep at the congestion thing -- I can certainly relate to the allergy season!!! I'm allergic all year around, so I never get a rest.

cheers
goose

Yes. I think it's the neti-spray. Whatever that system is they sell at the drug store. I have a theory that the ammonia odor may be from the chloramine they put in our water supply. I'll try mixing my solution with distilled water tonight and see if it goes away.

Thanks.

goose wrote:No help on the ammonia odor....I have never had that issue with a neti-pot. What is the spray thingie you're referencing?? The Neti-spray??

Happy to hear you're hanging in there -- and yes!!! It is one day at a time!!!!
Keep at the congestion thing -- I can certainly relate to the allergy season!!! I'm allergic all year around, so I never get a rest.

cheers
goose

Well I am sort of adjusted to a mask after trying several and then going back to the original. I still feel tired though! I don't think I have a machine that can tell apneas but I wonder if I am still having apneas. The dme is scheduled to do an overnight pulse ox which could halfway show something. I still am mouth breathing and have tried several rinses to keep my nose open without any luck. Just about at my wits end with this cpap business!
Jen

reefdreamer wrote:Well I am sort of adjusted to a mask after trying several and then going back to the original. I still feel tired though! I don't think I have a machine that can tell apneas but I wonder if I am still having apneas. The dme is scheduled to do an overnight pulse ox which could halfway show something. I still am mouth breathing and have tried several rinses to keep my nose open without any luck. Just about at my wits end with this cpap business!
Jen

If your machine is actually the one in your profile....M Series Pro C-Flex CPAP Machine.....then you absolutely DO have a machine that can detect apneas, hypopneas, snores, leaks, etc., etc. All you need is the software and card reader to see the events and what's going on. You would be able to determine how your therapy is working and your frustration level would probably decrease significantly if you could see for yourself.

Den

I thought only the remstar auto could tell that. I have a smart card already because the insurance required it so they could check my compliance. I will have to figure this stuff all out. What software should I get (encore reader?)
Thanks,
Jen

reefdreamer wrote:I thought only the remstar auto could tell that. I have a smart card already because the insurance required it so they could check my compliance. I will have to figure this stuff all out. What software should I get (encore reader?)
Thanks,
Jen

Unfortunately, too many people get that impression. The main difference between the Auto and the Pro is that the Auto will adjust pressures. When it comes to recording the events, both machines will do that.

This is what you'd need to get the reports:

https://www.cpap.com/productpage-bundle.php?BundleID=64

If you're not already doing this, you can get summary information from the LCD screen by setting this option: "Show AHI/Leak = On" and then following the instructions in the last section of those listed below.

Den

If you haven't been in the Setup menu, here are the instructions.


Hold down the <- -> buttons while plugging in the little power cord in the back, wait for 2 beeps release buttons. Then press the + key to enter setup mode, use the <- -> buttons to move to the next field, use the -/+ keys to decrease/increase values, when set press the On/Off button to exit Setup.

Therapy Mode = CPAP
CPAP Pressure = NN (only appears in CPAP mode).
C-Flex Setting = Off, 1, 2 or 3
Ramp Time = (0:05 to 0:45)
Ramp Start Pressure = 4.0cm (can be from 4cm to AutoMin pressure).
Mask Alert = On/Off (beeps on large leak, mask removal).
Auto Off = Off (turns off machine on large leak/mask removal) Suggest leaving it "Off"
Split Night Time = Off (options are Off, 120, 180, 240) Should be "Off"
Show AHI/Leak = On (enables logging to display) Suggest leaving it "On"
Patient Reminder = Off (days to remind you that you get a new mask w/Insurance).
returns to Therapy Mode =




==========Resetting LCD Display Data====================

To reset LCD Therapy data (does NOT erase any data from SmartCard):

1. Hold down the (<-) (->) buttons while plugging in the power on the back,
wait for 2 beeps or 5 seconds, release buttons.
2. Press the (->) key and navigate to Therapy screen.
3. Press and HOLD down the (-) minus key for 5 seconds and/or until therapy data is reset to Zero.
4. Press the (->) key to scroll back to main menu, press (+) key to enter Setup or
On/Off button to exit.

If you have a Remstar Pro (as your profile says), it is data capable. The only difference between it and the auto is that you cannot set a range of pressure. It would be set at straight cpap pressure ( which can be changed by you). As Wulfman said, you can (with software and a card reader) see if you are having apneas, hypoapneas, what you leak rate is, etc).

You need Encore Viewer Software and the card reader ( probably the USB one). Cpap.com has a package for sale with the Software and the Card Reader. You have the smart card already.

With this package, you can see what is happening in your sleep, and, with the help fo forum members, change your pressure for best results!


Note: Your DME will probably not like you having this but it's your therapy and your health.

Actually it looks like wulfman's way of changing my set up has helped with pretty much what I need and then I reset it so I can now monitor my apnea and leaks. Thanks,
Jen

Probably the dme company is going to kill me for messing with these settings but gosh it is nice to know if the therapy is working. Is it possible to still have apnea episodes if I mouth breath (with ffm)?
Jen

reefdreamer wrote:Probably the dme company is going to kill me for messing with these settings but gosh it is nice to know if the therapy is working. Is it possible to still have apnea episodes if I mouth breath (with ffm)?
Jen

Regarding your fear of your DME, you can always tell them that it's YOUR therapy and you want to make sure it's as good as it can get.
To your question about apneas......"Yes", but they would be more likely to be caused by your pressure not being sufficient rather than having to do with a full face mask.
There's no way that we can eliminate ALL apneas and hypopneas......but if we can eliminate as many as possible, that's what we try to strive for......and still get a good night's sleep.

Den

Wulfman wrote:

reefdreamer wrote:Probably the dme company is going to kill me for messing with these settings but gosh it is nice to know if the therapy is working. Is it possible to still have apnea episodes if I mouth breath (with ffm)?
Jen

Regarding your fear of your DME, you can always tell them that it's YOUR therapy and you want to make sure it's as good as it can get.
To your question about apneas......"Yes", but they would be more likely to be caused by your pressure not being sufficient rather than having to do with a full face mask.
There's no way that we can eliminate ALL apneas and hypopneas......but if we can eliminate as many as possible, that's what we try to strive for......and still get a good night's sleep.

Den

This is the first time ever I'm going to disagree with Den, so here goes:
The reason that xPAP is normally used through a nasal interface is that the airway is more likely to be opened up through the nasal pathway rather than through the oral pathway. That leads me to believe that at the same (correct, nasal) pressure, it might not be effective enough for all events if you're only breathing through your mouth. On the other hand, of course if your pressure is incorrect, which as Den says is more likely, then that would be a more likely reason for having a high AHI.

What is your AHI like now? Are you able to get the stats like Den explained?

You might want to try a Liberty or Hybrid. They have separate nasal prongs and mouth interfaces, and won't rub your nose bridge raw. In fact you could even plug the nasal output and just use it as a mouth mask!

One thing that helped me with leaking was to use a chin strap. I have been having congestion issues lately so I also can't breath too well through my nose, but I use the chinstrap to keep my mouth from moving, rather than to keep it completely closed. This avoids that my mouth drops completely open, which is what causes the horrible leaks for me on the UMFF. Actually I'm using the pap-cap, I didn;t like the way normal chin straps work.

Also on the UMFF, check that the angle of the forehead piece is correctly positioned. If I move it just one notch back or forward, it starts leaking like crazy.