What is your biggest CPAP struggle?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
kwikwater
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Re: What is your biggest CPAP struggle?

Post by kwikwater » Fri Oct 22, 2021 10:35 pm

I'm surprised that primary care docs don't ever bring up the subject. I've been on CPAP for 16 years and have never been asked anything about apnea. Our small town goes through PC Docs pretty quickly, but none of them ever address apnea. When I've needed prescriptions, I've coached them on what an online vendor asked for. They never ask for anything from a data card. When I see anomalies in my data, the Docs are clueless. I have my annual Medicare Med Check next Monday and I bet it doesn't come up again!! I'm glad I stumbled into a mask that has worked well for me for a number of years. I've used 2 different DMEs and neither of them have any way to test drive a mask, nor do they have any suggestions for changing masks. Basically, once you're given a CPAP, that's the last you hear from anyone involved!! I'm incredibly thankful for this page!!!!!

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ChicagoGranny
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Re: What is your biggest CPAP struggle?

Post by ChicagoGranny » Sat Oct 23, 2021 10:57 am

Sleep doc here…I am creating some sleep apnea and CPAP educational material and I want it to be useful.
zonker wrote:
Fri Oct 22, 2021 9:52 pm
i wonder if the good doctor will find time to come back and collect our wisdom?
She has completed the educational materials and moved on to other things.
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zonker
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Re: What is your biggest CPAP struggle?

Post by zonker » Sat Oct 23, 2021 12:06 pm

kwikwater wrote:
Fri Oct 22, 2021 10:35 pm
I'm surprised that primary care docs don't ever bring up the subject.
i consider myself lucky in that my former primary doc DID bring it up. i said i was having trouble breathing at night. he did some tests including for copd i believe. then finally said "i think you might have sleep apnea." which was the first time i'd ever heard of it.

he referred me to a sleep doc who, i later found out from this forum, was no better or worse than most sleep docs reported here. but he did get me the scrip and that lead me to here, where i found help.

at any rate, i'm thankful my primary doc thought of it!
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zonker
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Re: What is your biggest CPAP struggle?

Post by zonker » Sat Oct 23, 2021 12:08 pm

ChicagoGranny wrote:
Sat Oct 23, 2021 10:57 am
Sleep doc here…I am creating some sleep apnea and CPAP educational material and I want it to be useful.
zonker wrote:
Fri Oct 22, 2021 9:52 pm
i wonder if the good doctor will find time to come back and collect our wisdom?
She has completed the educational materials and moved on to other things.
Sleep Apnea and CPAP Training Manual

Join cpaptalk.com

The End
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people say i'm self absorbed.
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chunkyfrog
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Re: What is your biggest CPAP struggle?

Post by chunkyfrog » Sat Oct 23, 2021 7:35 pm

We do it out of our love and respect for our fellow apnea sufferers.
Experience with a horrible system has taught us that in most cases,
this process is "do it yourself"--out of necessity.
I suspect the "good" doctor was hoping for an "easy button",
and is not likely to return.
Or offer thanks . . .

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Pugsy
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Re: What is your biggest CPAP struggle?

Post by Pugsy » Sat Oct 23, 2021 7:51 pm

Hey guys and gals.
People can still read the posts here without logging in. People do it all the time.
To assume that someone hasn't been back here to read stuff just because the log in thing doesn't reflect a more recent log in is perhaps an error in assumptions.
Of course the polite thing to do would be log in and post a thank you but we have no idea what may or may not have happened.

Car wreck, sick family member, working brutal hours....we are still in the middle of a pandemic you know.

How about some slack since we don't have any way to know what may or may not have happened?

Everyone.....take a big patience pill. :lol: :lol:

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jonchalk
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Re: What is your biggest CPAP struggle?

Post by jonchalk » Sun Oct 24, 2021 1:27 am

Currently, my second biggest struggle is "deep sleep". Though I do appreciate having a CPAP to help me sleep, however, as my body has been deprived of quality sleep for decades, my body is adjusting at this time. For now it is catching up and putting me in a deep sleep as the brain is "afraid" that it will not get another chance at quality sleep. I don't hear the phone ring, nor my morning alarms, nor smoke alarm in the hallway, not even when my neighbour knocked at my door when she needed urgent help and tried to call me numerous time when I am on my CPAP. Alas, I must be patient with this adjustment. Eventually, it will become more balanced. I just need to be persistent and not give up on my CPAP therapy.

My first biggest struggle is finance. Unlike private insurance, government funding takes much more time to authorize a machine and associated, but essential supplies. "Comfort" supplies are not funded at all, such as tube warmers, cleaning supplies, mask cushions to put on basic cushions to reduce marks on face, etc. So the question, why do I not get private insurance? Mainly "pre-existing" conditions and affordability of the higher premiums for insurance that do accept people with "pre-existing" conditions. Government funding involves qualifications and then a panel that must review if a CPAP is the best therapy for me. This takes time. I don't yet know at this time. It took me two level III sleep study and that alone took nearly 7 years from the first referral and then an additional 3 more years for the second level III sleep study. Lack of funding and long wait lists. There are many "private" sleep studies available, but they are quite costly.

Add the recent supply chain problems, Philips recall, global microchip supply shortages, sudden global demand for machines from both the existing patients needing to replace their recalled machines and newly diagnosed patients, the pandemic causing havoc and inflation (a machine that used to cost about $2k CAD last year, is now in the $4k to $8k CAD range. CPAP machines could mean the difference between life or death for some patients while waiting for their own machine.

All three of these issues are quite complex in nature.

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ChicagoGranny
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Re: What is your biggest CPAP struggle?

Post by ChicagoGranny » Sun Oct 24, 2021 5:20 am

jonchalk wrote:
Sun Oct 24, 2021 1:27 am
putting me in a deep sleep as the brain is "afraid" that it will not get another chance at quality sleep. I don't hear the phone ring, nor my morning alarms, nor smoke alarm in the hallway, not even when my neighbour knocked at my door
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jas32
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Re: What is your biggest CPAP struggle?

Post by jas32 » Sun Oct 24, 2021 6:58 am

My biggest struggle is MOUTH BREATHING!

Next would be mask fit (essentially to fix above).

Unlike so many others, I was very lucky to easily adapt to sleeping with stuff hanging on my head and face and air being forced through my nose.

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sleepingwhileawake
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Re: What is your biggest CPAP struggle?

Post by sleepingwhileawake » Tue Nov 02, 2021 12:55 pm

CPAP use for 23 years here.

I've faced the mask fit issue, and while I would place that as #1, the real story is much worse than just fitting a mask.

In the world of CPAP therapy, you must, absolutely must, learn to self-manage. I know that breaks all the rules, but you'll never get the help or results by depending on doctors or CPAP suppliers.

For example, getting your settings right. In the beginning I had a "clinician" come to my home and set up the machine, mask, and pressures according to prescription. The pressure was so high I thought my head would blow off. And all of this during the initial adaptation period. So, I hit the internet and found the clinician manual, which tells you everything. I corrected the pressure settings and ramp times, then called my doctor and let him know what I did. His response? "We love it when patients do that! It's a short-cut to full compliance." Yes, in my case, self management was Dr. Approved.

And 23 years later, nothing has changed. I can't get Dr's support, so once again, I "hacked" into the menus and fixed my own problems. 3 machines over the decades, it's never been any different.

In the intervening decades, I've chosen my own masks, designed and built my own humidifier system, purchased a used machine (hacked in and set those pressures too!), and with my brand-new Philips-recall-replacement machine, hacked in and fixed the miss-set mask type, which had made the unit unusable.

To do any of this you need to educate yourself as to the goals and adjustments. Oximiters and now cheap, so you can even verify your blood oxygen levels during sleep on your smart phone. You can read out and verify compliance on the machines now (couldn't in the past), and basically, take charge of your own therapy.

The remaining struggle, for me, is now that I'm on Medicare, having to deal with Apria. They are just horrible. They are charing me for a recalled unit I couldn't use (I reverted to my old unit). They've over-charged me monthly even for that. In fact, while writing this, I've been on a billing support call with them now for 40 minutes getting their over-charges fixed. They refuse to support me as a user, referring to the Dr., which they are probably legally bound to do, but then, my Dr's office never, and I mean NEVER actually answers their phone. I can't get an appointment in any reasonable amount of time, and when they call me back it's always from an "unknown number", so it just goes to voicemail. That kind of communication is not communication at all.

So, little choice, but the best way anyway is "self manage". Study your compliance stats, collect blood ox levels if you like (I don't), and find the way into the Clinician's menu and fix your settings. It's your machine, and your life. Become your own CPAP Expert. Read and understand the clinician's manual, if you can find one. It's the only path to success with CPAP I've found.

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Miss Emerita
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Re: What is your biggest CPAP struggle?

Post by Miss Emerita » Tue Nov 02, 2021 6:38 pm

To sleepingwhileawake’s post, I would add the Oscar software as an invaluable tool for self-help.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

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chunkyfrog
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Re: What is your biggest CPAP struggle?

Post by chunkyfrog » Wed Nov 03, 2021 12:26 pm

This forum is the equivalent of a course in self-management of cpap therapy.
If offered by an educational institution, it would cost no small amount.
If offered by a medical practice--double that. :lol:
If covered by insurance, the premiums would be unaffordable.
Take what we offer, for free; and please spread the word.
There was/is a book, Sleep Apnea for Dummies--don't waste your money.

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Daisey9634
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Re: What is your biggest CPAP struggle?

Post by Daisey9634 » Wed Nov 03, 2021 1:23 pm

I have air blowing in my face with a resmed N30. Nose piece does not leak fits perfectly just vents blow air in my face. How do I prevent this?

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zonker
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Re: What is your biggest CPAP struggle?

Post by zonker » Wed Nov 03, 2021 7:00 pm

Daisey9634 wrote:
Wed Nov 03, 2021 1:23 pm
I have air blowing in my face with a resmed N30. Nose piece does not leak fits perfectly just vents blow air in my face. How do I prevent this?
welcome to the zoo!

please feel free to start your own thread. it's considered rude to tag on to someone else's thread.

good luck!
people say i'm self absorbed.
but that's enough about them.
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Susurrus1964
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Re: What is your biggest CPAP struggle?

Post by Susurrus1964 » Mon Dec 13, 2021 5:44 am

I've been using a CPAP for enough years I don't remember when I started.

The biggest problem I've had is finding a mask that works for me, because the manufacturers keep redesigning all the time and discontinuing masks that work for people.

When I got my CPAP way back when, it came with a Swift II mask. Since, I've tried a few of the center hose masks, and I can never keep the weight of the hose from pulling the pillow against my nose and making my nose hurt. I haven't gutted my way through it long enough to cause any kind of sores, but that shouldn't be necessary. The Swift II worked great for me, but it's no longer manufactured. I can get parts for it from various locations online, but who knows how much supply there is out there? What does a guy do when he can no longer use his medical device because it causes problems other than the one said device was intended to solve? In the short time I've perused the forum, I've seen people give workarounds for some of the difficulties they've had with mask comfort, but if a workaround is needed, the product is faulty and should be fixed (or shouldn't have been redesigned in the first place).

I think the general suspicion among most CPAP users is that the people making this stuff do not use their own product, so they don't have the knowledge of what their corporate (there's the real problem) decisions make on the rest of us.

So, ultimately, in response to the original post: the biggest "struggle" is that, due to seeming constant redesign, later on down the road, what worked for you might no longer be available.