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Take the good with the bad....
#1
Take the good with the bad....
So I am a relatively new CPAP user. Been almost a month now and I have learned a lot on this forum and I thank you all for helping me adjust what is not a natural and easy thing to get used too. I hope I have helped some of the other new comers as well with my words of encouragement and adjustment as well. So for the last few weeks I have been working through the mask juggling and watching my AHI numbers jump around from 8 or 9 or so to 5.8 and dealing with mask fit issues as well. So last night I did another adjustment to my auto setting on the machine low of 12 and high of 18 now because the 20 max was keeping me up at night. Also I took some time to fit my F-20 mask properly to my face and it made all the difference in the world.

Woke up this morning after wearing the mask for almost 8 hours (longest ever so far), my AHI was 4.4 and not a single leak during the night. After having probably the worse night I had since I got it the night before, I will take this and simply say I will take the small wins with the setbacks. I hope to continue this winning streak. One thing I notice is that there is very little communication from my DME and or doctor to me, they make changes to my machine (still in my compliance period) without telling me and it screws me up, this has been the most frustrating part to me so far. A phone call first to discuss would have been great.

Plugging along and keeping my fingers crossed...
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#2
RE: Take the good with the bad....
Your encouragement to others is surely both positive and welcome.  Let me offer some:  Except for a first horrid night where I was letting air out through my slack lips, and after which I learned to live with tape across my mouth, I have had excellent success.  However, the variance is astounding.  I have had perhaps five or six nights with "0.0", but my average runs 0.4 steadily, now on to my third year.  However, it was sobering to see the AHI showing "2.0" twice in the past six weeks.  And many nights it's upwards of 1.0 for me.  I have no idea why because my leaks are always well controlled.  Maybe chin tucking?  I don't wear a collar.

Many of us have results that are well under 2.0 steadily, while others seem to hover nearer to 4.0, twice what the others experience.  But, they say they feel great.  Maybe that's why the 'experts' tell us that an AHI just under 5.0 is considered 'treated'.

I think you could continue to experiment, try different sleeping arrangements, ear plugs if noise tends to intrude, nose drops or a spray if you find yourself getting stuffy as the night wears on....whatever is worth trying to see if it gets you closer to the magic.  It's there, just outside your reach.
Contrite, and wiser.
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#3
RE: Take the good with the bad....
Quote:One thing I notice is that there is very little communication from my DME and or doctor to me, they make changes to my machine (still in my compliance period) without telling me and it screws me up, this has been the most frustrating part to me so far. A phone call first to discuss would have been great.

Write to your doctor and DMR and state that you have not given consent for them to make any changes to your dosage. It is a serious breach of medical ethics to change treatment without the patient's informed consent.
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#4
RE: Take the good with the bad....
Sounds like you're plugging along really well!

Did your doctor/DME state that you must give them cellular access to your machine? If not, you can turn that off (unplug your modem on the left side under the flap) and/or turn on Airplane Mode.

My "doctor"/DME wanted me to let them get my info via the cellular connection, but they did not say they wanted continuous access. When I asked about it, they said they'd want access to it immediately preceding my appointment with them, as well as any time I call to ask them a question (ie: about my CPAP use). Otherwise, they didn't mind if I kept the cellular off/unplugged the rest of the time.

So perhaps you could just unplug your modem except for right before your appointments with them. That would keep them from messing with your settings.
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#5
RE: Take the good with the bad....
Congrats on the successes. Agreed on that need to confront doc/DME on secretly adjusting your machine settings. Tell them you didn't consent and to stop.

And yes, if there's no need to maintain cellular connection, as in this connection's status could affect data for compliance so you'd want to verify consequences. But if it didn't negatively affect compliance or insurance coverage, you can turn off the cell connection via activating Airplane mode. You will then be irritated by that screen pop-up about Airplane mode.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
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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#6
RE: Take the good with the bad....
(11-29-2019, 06:56 AM)SarcasticDave94 Wrote: you can turn off the cell connection via activating Airplane mode. You will then be irritated by that screen pop-up about Airplane mode.

The OP's profile states that a DreamStation is being used. The DreamStation has no such pop-up.
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#7
RE: Take the good with the bad....
(11-29-2019, 11:06 AM)Hydrangea Wrote:
(11-29-2019, 06:56 AM)SarcasticDave94 Wrote: you can turn off the cell connection via activating Airplane mode. You will then be irritated by that screen pop-up about Airplane mode.

The OP's profile states that a DreamStation is being used. The DreamStation has no such pop-up.

Sorry my mistake, somehow I missed that. Thank you for noting that.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
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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#8
RE: Take the good with the bad....
It's cheering to see signs of improvement, isn't it? And I'm sure by now you've also seen on the forum how important it is not to be downcast when the occasional worse night pops up.

Have you thought about downloading Oscar and taking a look at your data? The link is up at the top of the page. I don't know what kind of compliance period or rules you are coping with, but at some point -- soon, I hope! -- you will be able to do some fine-tuning with the help of the experts on this site, if you want to. Your Oscar charts would be invaluable at that point.
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#9
RE: Take the good with the bad....
Thank you all for the encouragement. I wanted to say that this past week has been wonderful. Although my AHI is still a bit wondering it is moving in the right direction. Last night was 2.7 the lowest I have had yet and I wore the mask for well over 8 hours too which is also a first. The night before was a 4.7 AHI so I think I am getting there. The last few nights have been wonderful and I actually wonder if the machine is on at times? Really hope this is signs of me getting used to it and my AHI goes down from here to the number you all are seeing! Thanks again for all of the support, this forum has really been quite useful and tons of information....
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#10
RE: Take the good with the bad....
You are most definitely getting used to it, which is one of th biggest keys to success!
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