What is your biggest CPAP struggle?

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

Post by KimberlyMD » Tue Oct 19, 2021 9:26 pm

Need help! Sleep doc here…I am creating some sleep apnea and CPAP educational material and I want it to be useful. Could you help me by answering any or all of the following questions:
-what do you struggle with the most with your CPAP?
- what do you wish your doctor or DME company would have told you when starting out?
- what do you want to know more about?

Thank you in advance!!

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Pugsy
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Re: What is your biggest CPAP struggle?

Post by Pugsy » Tue Oct 19, 2021 9:40 pm

CPAP veteran here of 12 plus years.
I have forgotten most of my struggles because I sorted them out fairly easily. I was one of the lucky ones. Took to cpap like a duck to water.

But I would like to mention one thing.....actually take time to listen to your patients and what they are actually saying.

No one really listens....that's my biggest beef with doctors and DMEs.

From what I have seen on the forum in over 12....finding the right mask ranks right up there for a lot of people's problems.
It's not easy because everyone is different in what they need in terms of masks. What I might love the next person will hate...and what that next person might love, I might hate....but both masks are actually decent masks in the overall scheme of things.

Everyone has different preferences, wants and needs.....and often they have no clue what it is they want or need.
Lots of work sorting it all out.

I wish you the best of luck....at least you are willing to try to dig in and help.
My own sleep doc was an ass...but he had a real gem for a PA and I was lucky to deal with her. :lol:

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Bookbear
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Re: What is your biggest CPAP struggle?

Post by Bookbear » Tue Oct 19, 2021 11:11 pm

I would agree with Pugsy.... the mask is critical to success. Too often new patients are just given any mask (usually w/o any attempt to fit the patient's facial structure or sleep habits). Patients are also rarely informed of the fact that nearly every mask manufacturer allows for no cost returns for usually 30 days. Yes.... machines do differ in their treatment algorithms, but all provide at least adequate treatment. It's the mask that is a make or break issue.

Also, be sure to tell your patients about this forum!

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Sheriff Buford
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Re: What is your biggest CPAP struggle?

Post by Sheriff Buford » Wed Oct 20, 2021 3:16 am

Been here a little less than the Pugs. The mask struggle.... hands down. For last several years I have ben trying to adjust to wearing a full face face mask. I'm not a good candidate for this mask. I'll go great for a couple months, then my bridge of nose will start to hurt. I've found the Resmed F20 works best for me. I'll try the Mirage Quattro In the next few days. The Quattro has an adjustment for the area around my Cherokee nose. I normally wear my trusty ole Total mask. But it leaves marks on my cheeks.

Listen to what Pugsy says. She won't steer you wrong. She a good lady, though there was a couple of times she probably wanted to kick my butt.

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zonker
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Re: What is your biggest CPAP struggle?

Post by zonker » Wed Oct 20, 2021 11:30 am

KimberlyMD wrote:
Tue Oct 19, 2021 9:26 pm
-what do you struggle with the most with your CPAP?
i concur that masks are very hard to figure out because of the differences in facial structure. you might also be aware that there is more to masks than just a full face mask. for me, a nasal pillow mask (resmed P10) is the way to go.
- what do you wish your doctor or DME company would have told you when starting out?
that this is a process, not a "one and done". that is, just by getting a machine and mask, suddenly all will be well. this journey is long and can take some time for the benefits to come to fruition. i was one of those folks for whom it seemed to take FOREVER to see the good things start to happen.
- what do you want to know more about?
as mentioned, the time frame. some folks want to know more and "get into the weeds". others are more results oriented.

other things_can you please stop telling patients that an ahi of under 5 is considered good? here in the forum, we strive to get under 2. and most of the veteran forum members are under 1.

PLEASE stop the default settings of 4 for minimum and max at 20. the 20 part is good and will work for most newbies. but that minimum of 4 leaves most newbies gasping for air. MUCH better would a start of 6 or even 7.

and lastly, i want to thank you so very much for coming in! in the forum, we don't have a good opinion of most sleep docs or dme's. this because so many of them don't seem to want to engage with the patient. and that's why we exist; to help newbies take their treatment into their own hands.

so i feel very encouraged that you've come in here seeking feedback.

good luck!



Thank you in advance!!
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but that's enough about them.
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ChicagoGranny
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Re: What is your biggest CPAP struggle?

Post by ChicagoGranny » Wed Oct 20, 2021 11:57 am

KimberlyMD wrote:
Tue Oct 19, 2021 9:26 pm
what do you want to know more about?
Everything I needed to know was found in this forum. The sleep doc wasn't much help except for doing the things that insurance requires for coverage. When she left town, I went to my GP to write prescriptions. He said he didn't know anything about CPAP. I said not to worry, I would tell him what to do. The arrangement has worked well for about five years now.

The types of problems CPAP users encounter take a lot of time plus trial and error to resolve. Optimizing the therapy can likewise take a lot of time. The patient class cannot afford to pay doctors to spend a lot of time with them. Plus, it's often mundane work that does not make for interesting days for doctors or assistants. IMO, it's a DIY process that works best. Of course, a large segment of CPAP users does not have the problem-solving skills to DIY. :(

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babydinosnoreless
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Re: What is your biggest CPAP struggle?

Post by babydinosnoreless » Wed Oct 20, 2021 12:06 pm

KimberlyMD wrote:
Tue Oct 19, 2021 9:26 pm
Need help! Sleep doc here…I am creating some sleep apnea and CPAP educational material and I want it to be useful. Could you help me by answering any or all of the following questions:
-what do you struggle with the most with your CPAP?
Mask fit

- what do you wish your doctor or DME company would have told you when starting out?
Insurance issues. They lied about costs !! Took me over a year from sleep study to getting a machine and even now they are not upfront about costs.
- what do you want to know more about?
Learned everything I needed to know from here, but more info on hose temp and humidity would have been nice when I was starting out.

readingteacher
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Re: What is your biggest CPAP struggle?

Post by readingteacher » Wed Oct 20, 2021 12:31 pm

I am nearly one year into the CPAP journey. Been on the correct machine for me, Resmed ASV, since March 30.

Finding a mask that worked for me was the hardest struggle. Because I have a severe TMJ issue, my dentist and physical therapist both insisted that I could not have a full face mask or any mask that put pressure on my jaw. I started with a Resmed nasal pillow mask, but after the second morning I awoke with a pimple under each nostril. These quickly turned into sores that were extremely painful (not to mention ugly). All the DME tod me to do was put Neosporin on them during the day when I was not using the mask. I trimmed bandaids to put under my nose each night, but that was less than ideal and I still had sores. I figured it might be something I had to live with.

Fortunately, at my first follow-up visit, my sleep doctor contacted my DME, and told them to contact me about trying a different mask. I went with the Phillips Nuance Pro at their recommendation. Much softer nasal pillows. Also, I learned about RemZzz's mask liners for nasal pillows here on CPAPTalk. I have stayed with the Nuance Pro and the mask liners ever since. No more sores, not even red marks!

My dentist (not my doctor or DME) also told me about mouth tape, which is essential for me to prevent leaks and get good results.

I also figured out by myself a couple of months ago that I have a small head, and the Nuance Pro, while working, was too big for me. I cut 2 inches off the back strap and sewed it back together. Finally perfect! Before that, I had to pull the straps so far up that they barely had a place left to attach the velcro to the headgear.

I wish the doctor and/or DME would tell us about comfort products that are available, like mask liners and mouth tape. And that CPAP masks should not cause pain and sores. I am so thankful for this website, which gave me the info I needed to make the CPAP comfortable.

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Hang Fire
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Re: What is your biggest CPAP struggle?

Post by Hang Fire » Wed Oct 20, 2021 12:52 pm

KimberlyMD wrote:
Tue Oct 19, 2021 9:26 pm
Need help!
Sometimes, it is better to ask what worked instead of what didn't work. See Success Stories thread at the top of the first forum page.

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Miss Emerita
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Re: What is your biggest CPAP struggle?

Post by Miss Emerita » Wed Oct 20, 2021 1:05 pm

After around 3 years on PAP, I say +1 to all the posts so far! I also want to advocate for treating the first days/weeks of PAP differently from the end-state you want your patients to achieve. I posted my thoughts about this a while back and wanted to repost them here.

Depending on who you ask, between 29 and 83 percent of people who start PAP therapy wind up quitting. What would apnea treatment look like if it were designed to help patients stick with it? Except for the sickest patients or those with the most severe AHI, it would introduce treatment gradually, humanely, and informatively, removing roadblocks to consistent use.

In the short run, this would require more investments of time on the part of sleep clinics, but it might reduce burdens on them in the long run and, above all, it might increase benefits to many more patients. With what I have in mind, AHI might remain fairly high for many patients during the early weeks of treatment, but the payoff would be an increased likelihood that many more people would stick to effective therapy for the long term.

Here is an example of what I’m thinking about. I’m sure other people could come up with something better. In an ideal world, there would be controlled experiments testing protocols like this.

A. Do not perform a split-session study unless the Pt is trialing different kinds of machines. Do not begin therapy with titration. This is to avoid subjecting the Pt to negative experiences at the outset of therapy.

B. After the sleep study, the doctor or RT meets in person with the patient to explain the diagnosis and the ways in which treatment will be beneficial, and to answer the Pt’s questions. If Pt has a spouse, ideally the spouse is included in this meeting.

C. Treatment is introduced slowly, in gradual steps.

1. On day 1, the Pt meets with the RT for an hour to try on masks. A few masks are selected for further tryout, and the patient wears them while hooked up to a machine set at easy pressures (e.g., straight 7 with EPR of 3). Pt and RT work on mask fitting and adjustment, including time in the Pt’s favored sleep positions.

2. Rest of week 1. Pt is instructed to try using the favored mask with the easy pressures for 1 hour per day while doing something enjoyable, e.g., watching TV or reading. Family members should be around and might even try out the equipment themselves.

3. On day 8, Pt meets again with RT for 30 minutes to discuss the experience, change or adjust the mask, and prepare for nighttime use. Advice given at this point would include, as appropriate, hose management options, management of dry mouth, use of chin straps, neck collars, or tape, and bed-pillow options. Samples would be available to try.

4. Rest of week 2. Pt begins nighttime use at the easy pressure settings. Goal is simply to use mask and machine for 4 hours per night or more. Pt keeps notes about the experience.

5. On day 15, Pt meets with RT for 30 minutes to review notes, fine tune hose and leak management, and work more as needed on mask fit.

6. Rest of week 3. Pt’s goal is now to use mask and machine for the whole sleep period, still with the easy pressure settings.

7. Beginning of week 4. After phone consultation, RT adjusts pressure in light of data from weeks 2 and any upward adjustments are fairly small, with the size of increases gauged in light of Pt’s experience.

8. Beginning of week 5 and onward. Rinse and repeat until AHI data and sleep/rest experience indicates pressures are optimal, generally leaving new pressures in place for at least several days before adjustments.

9. If Pts are interested in seeing more analysis of their data, e.g., via Oscar, RT will not discourage them but will instead invite them to raise questions or make suggestions based on their data. As appropriate, RT will work supportively with Pts who want to take on the job of fine-tuning their own settings.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

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booksfan
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Re: What is your biggest CPAP struggle?

Post by booksfan » Wed Oct 20, 2021 6:35 pm

KimberlyMD wrote:
Tue Oct 19, 2021 9:26 pm
Need help! Sleep doc here…I am creating some sleep apnea and CPAP educational material and I want it to be useful. Could you help me by answering any or all of the following questions:
-what do you struggle with the most with your CPAP?
- what do you wish your doctor or DME company would have told you when starting out?
- what do you want to know more about?

Thank you in advance!!
You've gotten some excellent answers here!
I'm coming up on 4 years of CPAP usage. My first 15 months, it was so difficult to find a mask that worked for me. I must have tried at least 8 or 10 the first month (some never left the DME's office), before settling for the least objectionable one. I then proceeded to purchase approximately one mask every 3-4 weeks for the next 14 months (on my own dime, mind you!), trying to find something that worked better for me. One that stayed on, did not slip up the back of my head and off my face, causing multiple awakenings every night and needing constant adjusting all night long, leak air or exhaust into my eyes (exacerbating my dry eye to the point I could barely see during the day and needed to see a dry eye specialist!), the list goes on! Drove my husband crazy as he is a PAPer as well and happy with his mask! After 15 months the Bleep came out and solved my problems! So finding a mask was what I struggled with most.

I do wish my sleep professionals (the original one who has left the practice, his PA, and the replacement I see now) would actually LISTEN! They all just pretty much look at the number..."AHI and compliance look good, you're doing great." (AHI is generally around 1, almost always under 2. I use my CPAP EVERY night, except a couple of nights when I've been vomiting.) BUT...I still don't sleep well! I wake up multiple times a night. Sometimes I have trouble going back to sleep. Some nights, I lay awake most of the night (2 nights ago...miserable!). And when I tell them, EVERY ONE of them says, "But your numbers look great!" And that's it! I have questioned whether perhaps I have a problem with my sleep cycles or sleep architecture..."Your numbers look great!" I have no doubt that my CPAP works. I just wonder what else is going on and I would like my SLEEP DOCTOR to help me with that!

Personally, I think your patients are lucky. It's great that you are interested in helping them, coming here and asking these questions, exploring possibilities, etc. So many sleep docs, DMEs, etc. just don't bother :( .

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sephiro499
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Re: What is your biggest CPAP struggle?

Post by sephiro499 » Fri Oct 22, 2021 12:01 pm

Stop de-funding the paraprofessionals! Before the Affordable Care Act Medicare beneficiaries could use ANY DME. And we could get actual advice and help with REAL WORLD issues like finding a mask, leaks, etc. Stuff that a Dr doesn't do. Now our choices are Apria or Lincare both horrible and go out of their way NOT to help you. Which is why I buy my supplies on ebay. Using the insurance is impossible.

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Re: What is your biggest CPAP struggle?

Post by scf » Fri Oct 22, 2021 3:58 pm

I am new to APAP, only four weeks into this process, I am a retired RN/JD and worked in hospitals for 45 years. I knew I had to succeed in this for my heath and I was determined to do it. Honestly I do not think I could have made it without this support group. So please tell your patients about this forum. It is invaluable.
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Janknitz
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Re: What is your biggest CPAP struggle?

Post by Janknitz » Fri Oct 22, 2021 7:49 pm

I agree, getting a properly fitting mask and learning how to sleep comfortably with it is by far the biggest struggle. When that's ignored, most people fail CPAP right off the bat!

But I think there's something else that makes life miserable for newbies and that is ramp settings and wide open APAP's. While yes, it's hard to learn to sleep with a gale wind blowing at your face, it's also somewhat claustrophobic when the pressure starts off at 4 cm/H20. After getting used to the sensation of air blowing, it feels like you aren't getting ANY air (even though you are). Most people turn off the ramp within a few days, and they need more pressure at the beginning--6-8 at the very least--with full exhalation pressure relief. This can alleviate a lot of the anxiety that you are suffocating. Starting pressure at 4 also causes an APAP to "chase" apneas which causes awakenings and panic, too.
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zonker
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Re: What is your biggest CPAP struggle?

Post by zonker » Fri Oct 22, 2021 9:52 pm

i wonder if the good doctor will find time to come back and collect our wisdom?
people say i'm self absorbed.
but that's enough about them.
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