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Feeling Lost - Not sure what settings to set
#1
Feeling Lost - Not sure what settings to set
I sleep WORSE with the machine on then I do with it off.  But, my husband is complaining of me snoring and my doctor is telling me not using it will eventually kill me.  How can I make it work?

I've tried several masks.  I used:
DreamWear Full Face Mask
Wisp
ResMed Mirage ™ FX for Her nasal mask
Fisher & Paykel Simplus Full Face CPAP
Fisher & Paykel Eson 2 Nasal Mask

I have tried the humidifier and that seemed to make things worse.

I am using the Luna auto CPAP machine.

I have great difficulty falling asleep with the mask on.  if I do manage to fall asleep, I usually wake up a few hours later with an elevated heart rate, gasping, and feeling like I haven't been breathing.

I have a little bit of data, but not much because as I've stated, I hate the thing and I keep taking it off. 

My settings were 5 going up to 10.  I complained to my doctor and he changed my settings to 7 going up to 9.  I feel like since he changed the settings my symptoms are worse.

   
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#2
RE: Feeling Lost - Not sure what settings to set
First thing to try is to wear mask and machine during the day for an hour or so. Do this each day. This will slowly get you used to the sensations.

Second thing is to know you aren't alone. Perhaps that should be the first, actually! Anyway, you aren't. Many of us go through dozens of masks before we find one that works. Each face is different. Each need is different. That's why there's so many of the darn things.

Do you open your mouth when you snore? Or does it stay closed? If it stays closed, you can wear a simple nasal pillow mask. They're lightweight and unobtrusive. If you snore with your mouth open or breathe with your mouth open in your sleep, then you'll need either a full face mask (covers mouth and nose) or a nasal mask or pillows mask combined with a chin strap.

Looking at your data chart, if I am understanding it correctly, your pressure is set a little too low. 7 should be the minimum (maybe 8) and I'd toss a guess of at least 11 for the maximum. Your AHI seems to be good and consistently below 5, which is the goal. However, we don't know what events are happening, only the final number.

And why on earth were you given such an odd machine? I'd never heard of the Luna. If your insurance is still paying for it, return it and request another. Preferably either a Phillips-Respironics or a Resmed. They're the two most popular and the free software OSCAR works with both. I am impressed the Luna produces data but disappointed that data is not more detailed. Such as the types of events which is extremely important. If mostly hypopneas, we'd recommend one thing. Central events, something totally different. And of course obstructive, which is yet another set of advice.

Welcome to Apnea Board and I hope you find the help you are looking for!
PaulaO

Take a deep breath and count to zen.




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#3
RE: Feeling Lost - Not sure what settings to set
G'day misdaph. Welcome to Apnea Board.

Seconding what Paula has said, we need to see some detailed data from your machine to give definite advice. Unfortunately the Luna is not supported by Oscar or SleepyHead. However it does have its own software which (apparently) gives reasonable detail. You can download a copy via our private files and links forum http://www.apneaboard.com/forums/Forum-P...-and-Links . Look for BMC 3B RESmart Software for Windows Only. We're seeing the Luna and other BMC machines more often - they seem to be a reasonable quality machine from China, in appearance something like the previous generation Resmed S9.

Looking at the data you have provided, your leaks are completely under control, so the choice of a mask for you will be driven by comfort. Your AHI likewise is not too bad most nights, so it seems the therapy is working even if it doesn't feel like it. The important thing at this stage is to realise that nearly all of us have been through the same adjustment - some people take to CPAP like ducks to water but for most of us it is not easy. It's going to take some time and self-discipline and you will definitely be tempted to give up. But the effects of apnea on your body are insidious and cumulative - you need to get through this difficult phase to prevent apnea from grinding you down.

Let's see some more detailed data and we'll try to give you some more specific advice. In the meantime, wear the mask as frequently as possible so that it becomes second nature. Then you'll be able to sleep with it and start feeling the benefits.
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#4
RE: Feeling Lost - Not sure what settings to set
Welcome to the Apnea Board.

Ditto the above. I've been there as well. Do your best to keep trying to use it as much as possible. If you're able, do try exchanging the machine for a ResMed AutoSet or AutoSet For Her, given the OSCAR compatibility and more detailed charts it can produce.

I didn't notice if you'd mentioned it, but if you've had the sleep study, request a detailed copy of that and post redacted screenshots. It serves two purposes, 1. you need the info yourself if the doctor or other facility that has that sleep study closed its doors and 2. the above mentioned posting this here. There's info in that study that can help us in helping you be successful.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Feeling Lost - Not sure what settings to set
Thank you for the positive feedback and support.

My mouth does stay closed when I sleep.  I haven’t tried a nasal pillow.  I’m a little scared of them because they gave my husband nose bleeds and he woke up snorting and snarling several nights.

I utilized a virtual sleep company called Singular.  They did an at home test and did not take insurance, so I unfortunately paid out of pocket for the Luna.  I’ve had it awhile and I can’t return it.

I have scheduled a follow-up with a face-to-face pulmonologist.  They want to do in lab sleep study.  I honestly don’t know how I can swing it with a small child at home that I care for.  The benefit of getting a new doctor is that my insurance will pay for a new machine.  Do you think an in-lab sleep study is necessary?

Alternatively, I found a Phillips Dreamstation used online for 400.00 with a heated humidifier.

I’ve attached my at home sleep study. I don’t feel that it’s very revealing.

I can try to up the settings to 8-11 tonight.
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#6
RE: Feeling Lost - Not sure what settings to set
   
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#7
RE: Feeling Lost - Not sure what settings to set
(10-16-2019, 06:34 AM)misdaph Wrote: I haven’t tried a nasal pillow.  I’m a little scared of them because they gave my husband nose bleeds and he woke up snorting and snarling several nights.

What about a nasal cushion, like the Dreamwear?
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#8
RE: Feeling Lost - Not sure what settings to set
(10-16-2019, 06:34 AM)misdaph Wrote: I have scheduled a follow-up with a face-to-face pulmonologist.  They want to do in lab sleep study.  I honestly don’t know how I can swing it with a small child at home that I care for.  The benefit of getting a new doctor is that my insurance will pay for a new machine.  Do you think an in-lab sleep study is necessary?

Probably not. 

I'd talk to the doc about your concerns and situation, and see if they will prescribe an auto CPAP based on the at home study.

General recommendation around here is to try to get a Resmed Autoset 10, maybe the "for her" model if you can get it (not that there's anything wrong with the Dreamstation).
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#9
RE: Feeling Lost - Not sure what settings to set
Just to clarify: the Luna is an automatic machine which provides full data, just not compatible with Oscar. While it's probably not the first choice for most if us there's really no good reason to change, especially if the OP is paying out of pocket.

Looking at the test results it looks like this is a fairly straightforward case of obstructive apnea and hypopnea. Once we get past the comfort issues it should be fairly easy to dial in the correct pressures and get Misdaph's therapy on track.
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#10
RE: Feeling Lost - Not sure what settings to set
(10-16-2019, 06:34 AM)misdaph Wrote: Thank you for the positive feedback and support.

My mouth does stay closed when I sleep.  I haven’t tried a nasal pillow.  I’m a little scared of them because they gave my husband nose bleeds and he woke up snorting and snarling several nights.

I utilized a virtual sleep company called Singular.  They did an at home test and did not take insurance, so I unfortunately paid out of pocket for the Luna.  I’ve had it awhile and I can’t return it.

I have scheduled a follow-up with a face-to-face pulmonologist.  They want to do in lab sleep study.  I honestly don’t know how I can swing it with a small child at home that I care for.  The benefit of getting a new doctor is that my insurance will pay for a new machine.  Do you think an in-lab sleep study is necessary?

Alternatively, I found a Phillips Dreamstation used online for 400.00 with a heated humidifier.

I’ve attached my at home sleep study. I don’t feel that it’s very revealing.

I can try to up the settings to 8-11 tonight.

Misdaph, there is a Resmed S10 CPAP machine in the Orlando Craigslist for $300.  The pictures show this is an Autoset, and this would be the best machine for your needs.  The Resmed Airsense 10 Autoset has a very responsive auto pressure and uses exhale pressure relief (EPR) which works like a bilevel. This is the Cadillac to your Yugo Luna.  You will find this machine much more comfortable and effective, and much better than the Dreamstation.  I'm certain we can get you dialed in and doing better very quickly.

I think you might find these comparisons of different machines to be helpful. The Resmed Airsense 10 Autoset comes out on top consistently:
http://www.apneaboard.com/forums/Thread-...P-Machines
http://www.apneaboard.com/forums/Thread-...rification
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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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.
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