Still Trying to be compliant after 3 yrs Is APAP an option?

[atruvirgo]

It seems that with my lack of complaince has come many health issues besides the obvious "Sleep Apnea". I think I am finally ready to admit that I am taking a risk with my health that I should not be taking. I have high CRP levels (inflammatory markers), weight gain, WORSE snoring and alot of vague pain, cramping in my body and some heart palpitations. WIth CPAP I get pressure pain in my ears and a lot of Aerophagia, swollen eyes, acid reflux and a stiff neck.. I wake up during the night and several times let out huge amount of burping. It just seemed like I was trading one thing for another. I would like to know if an APAP machine would help with the pressure on my ears and also the air in my gut. My thinking is that if it is only sending the needed amount instead of a pressure of 9 blowing constantly, I would only get what I need. I am now snoring and gasping when I nod off on the couch. My family tells me that when I am upstairs sleeping and they are still up watching TV they have to increase the volume. My 2 yr old granddaughter spent the night and woke up in the middle of the night cause she was scared of the bear! I know it is getting worse but, I feel so confined with that blasted cpap get-up. I have equipped myself with all the CPAP comforts available. Padacheek, CPAP Pillow, Hose Cover, Pur-Sleep and I still HATE it!! I know I'm whining but, I am just trying to be honest. I would appreciate any help. Thanks Debbie

[robysue]

I think I am finally ready to admit that I am taking a risk with my health that I should not be taking. I have high CRP levels (inflammatory markers), weight gain, WORSE snoring and alot of vague pain, cramping in my body and some heart palpitations.

and

WIth CPAP I get pressure pain in my ears and a lot of Aerophagia, swollen eyes, acid reflux and a stiff neck.. I wake up during the night and several times let out huge amount of burping. It just seemed like I was trading one thing for another.

It is good that you are now ready to admit the toll that the anea is likely taking on your health as well as the alarm that it is causing your family. But you clearly have unresolved issues from trying to adjust to straight CPAP.

Some questions.

1) How far "out of compliance" are you? In other words, I know you say you hate the CPAP, but how often (or perhaps more honestly, how unoften) do you actually attempt to sleep with the CPAP?

2) When you sleep with the CPAP, how long can you stand to have the mask on before you rip it off? What leads you to ripping it off?

3) Have you ever slept long enough at one time with the CPAP on to wake up feeling any better just for one day?

4) Have you ever slept with the CPAP on enough nights over a long enough time to start to feel a difference in how you feel and function during the daytime?

5) Have you ever mentioned the problems with your ears and eyes while using CPAP to your doctor? What did he/she say about it? Have you mentioned the aerophagia, the stiff neck, and the acid reflux to your doctor? Did he/she make any suggestions on how to manage these things? Have you tried any of the suggestions?

6) Have you tried using a different mask?

Because if you've really tried to make CPAP work---and that includes working with someone like a nurse or a PA in your sleep doctor's office to try to address some of your problems and maybe also working with your DME to addresss some of the problems---and you've NOT be able to make CPAP work, then yes, your sleep doctor might be willing to authorize a change to an APAP. That may or may not work. If APAP doesn't help, then your doctor might suggest trying a bi-level machine.

Best of luck

[elena88]

Three years is a heck of a long time to not be getting the results you need..

get an apap, you can always run it straight it you want to..

it doesnt sound like you are having a fine time with the one you have now.

If you get an apap you can experiment to your hearts desire, and find out what the heck is really going on..

also if you sleep on your side and tilt your head forward that will help stop swallowing air..

Its possible your pressure does not need to be that high all the time..
You can get this to work for you, its just going to take some good old fashion Sherlock Holmes sleuthing around with an auto.. and maybe
even an oximeter..

the s nine autoset is where I would start..

[Slinky]

First of all, do you WANT CPAP therapy to work for you? Or not? 'Cause if you don't want it to work for you, it isn't going to 'cause you aren't going to be diligent enough for it to work for you.

Second, since it has been 3 years you are due for a new in-lab sleep/titration study. Or at least an in-home auto-titration.

The aerophagia and ear issue could be due to too high a pressure setting for you. Sometimes just starting out at a lower pressure and building up gradually to your titrated pressure solves the problem.

No one has a more vested interest in your health than you do - so it is up to you to ASK your DME provider's RRT for help, to ask the sleep lab and sleep doctor for help every bit as much as asking here since they are the ones w/the power to get you the prescription you need.

[Stutz427]

Well, I guess you have to decide if you want to take all the adverse health risks by not complying. I have three friends that felt it was too much trouble to get used to the CPAP machines, with one of them outright selling it!! The other two might use it every couple of weeks and subsequently don't feel they are getting better. The computer adage "garbage in garbage out" comes to mind. I on the other hand have made it my mission to better my therapy. On one of my studies they found I was having 123 events per hour. I used to fall asleep at stop lights and during meetings. I did this for about 10 years before treatment. I am sure that contributed to high blood pressure and some other bad health issues. I wish I would have received treatment early. I have now been on treatment for over 7 years. At first as a straight CPAP user. Did it take some getting used to? You bet. Who wants to sleep hooked up to a machine? About 3 years ago I found this site and also was given an AUTO. I also received the software. While the original AHI's with the straight CPAP used to run about 5, I now have worked it down to 1 or less. This has not been easy, but I have to tell you, I don't fall asleep during the day as much, I can watch a movie without snoring, and hopefully will be around for a while longer. Besides having the potential to hurt your health, there is also the possibility you simply won't wake up by not following your Dr's advice. That is what worries me about my 3 friends, that is I will be going to their funeral. So, my advice to you, is do the research, determine if you want to improve your life, and then with the help of others on this site, make every effort to make things work out. It won't be easy but I bet the outcome will be worth it.

[Janknitz]

I don't think we have to convince this poster that CPAP is needed, I think this poster, after 3 years of unsuccessful attempts, has finally "gotten religion" and is ready to buckle down and make this work. What Atruvirgo is asking is for help in making it work this time. I sense that he/she is FINALLY ready to make a serious attempt.

Atruvirgo, a more up to date, auto machine may help. It's unlikely that insurance will pay for it, though, so if you are going to really commit to this therapy this time, you may have to put your money where your mouth is and buy your own machine. That's not a bad thing--money can be a great motivator You will buy into this therapy much more if you research the best machines, choose what you want, and pay for it out of your own pocket. Remember that the key to wearing CPAP all night long is really the mask, though. So if funds are limited, that may be where the money should go.

I'm interested in the answers you may have to Roby Sue, because those answers will help us help you. If we can pinpoint why you have been unsuccessful to date, we can help you overcome the issues that have been barriers to success. And a new sleep study may be in order. Three years of untreated apnea is likely to have resulted in some changes in your apnea status.

Try to answer RS's questions honestly for yourself and for us and we'll see what we can do to support your success.

[jmelby]

You asked specifically about APAP... I can tell you from personal experience that I am much more comfortable using APAP with a range of pressures than using straight CPAP. I was originally prescribed APAP 7 - 15 because they could not get a good titration in the lab. After 2 months, a respiratory therapist at the sleep lab read the data and set the machine for CPAP 11 based on my 95% pressure (where it ended up most of the time on APAP). However, I found it to be very uncomfortable and my AHI actually went up. So, after about a week of trying that, I went back to APAP and eventually settled on a more narrow range of 9 -13. I think the lower starting pressure makes it more comfortable for when I don't need the higher pressure. Another thing you might want to check into is bi-level... you'd need a new prescription from your doctor for that (unlike APAP), but you may also be able to get that covered by insurance if your doctor deems you to have "failed cpap" and submits the report to your insurance. I haven't used bi-level personally, but the difference in exhale and inhale pressures can make it more comfortable for some (more so than CFLEX or EPR).

[atruvirgo]

I just spent an hour writing a response and all of a sudden I lost it here. I don;t have a clue what happened but clearly it's gone so I will have to re-do it as soon as I have time. I am going to try a lower pressure to start and I will rewrite my post again tomorrow when I have time. Thanks to all of you!

Debbie

[ozij]

Hi Debbie,
Yes, and APAP is an option - and so is a Bi-Level machine. Either - or both - may make therapy more tolerable for you. Slinky made some very good points:

Second, since it has been 3 years you are due for a new in-lab sleep/titration study. Or at least an in-home auto-titration.

The aerophagia and ear issue could be due to too high a pressure setting for you. Sometimes just starting out at a lower pressure and building up gradually to your titrated pressure solves the problem.

(my emphasis)

Before you buy an APAP see if you can get a DME to loan you one - rent it if necessary - some people do well with all types of APAP, others do well with one, and not well at all with another - APAP's made by different companies work differently and you can't know, ahead of time, which one will fit your breathing.

[TerryB]

Hello Debbie,
This is just my $0.02 and you may find it worth less than that. however.
Obviously your ear and stomach problems are a huge part of your discomfort.
You need to talk with your doctor about both of those problems.
I have found that I am most comfortable with a steady pressure.
No Ramp, no flex, no APAP although my machine is capable of all those variations.
Nice and steady does it best for me (AHI under 2 all night every night).

Please hang in there and get some help for that granddaughter's sake and yours.

TerryB

[Ms. L]

A lot of good advice is posted above. Definitely speak with your doc about the issues you are having. Robysue posted a lot of good questions.

In my husband's case, he was prescribed cpap of 11. He was not hardly compliant at all. Finally, he started using it, for me, so I could sleep. But he still couldn't stand it. Had terrible bouts of aerophagia. Big burping at night. Even burping and such throughout the day. Would wake up with headaches. He even had his C-flex on 3. Which is supposed to be the most relief on exhaling for the PRS1 cpap. Though I'm guessing still not enough for him. I read somewhere that one increment of c-flex was equal to about .5 pressure. So on c-flex 3(if I understood correctly), his pressure was being reduced by 1.5. Which would mean on a pressure of 11, his c-flex exhaling pressure was going down to maybe 9.5

Talked to the doc about it all. Doc switched his pressure down to 8 to see if he could tolerate the machine. Seemed to do better. Doc switched pressure back to 10. Aerophagia came back along with headaches, falling asleep even at a stop light once(which oddly enough he never did pre-cpap). Doc switched him to try the bi-level auto after he couldn't tolerate the 10. He prescribed his pressures going in (IPAP) as high as 15 and pressure while he exhales (EPAP) as low as 6. Most nights his IPAP pressure stays below 10 and his EPAP pressure stays down and bottoms out at the 6. Maybe he needs lower?

Anyway, he feels a whole lot more comfortable so far on a bipap/bilevel. He must've needed a somewhat lower inhale pressure and definitely a much lower exhale pressure. The aerophagia is gone for the most part. We have the software and notice that the nights his pressures were over 10, he has headaches and at times a bit of aerophagia the next day. But certainly not the levels of aerophagia he had. I mean, back at the 10 and 11 constnat cpap pressures he felt like a balloon that someone just blew up.

We found out thru our insurance and thru this site, that Bi-pap/Bi-level is a different kind of therapy and our insurance covers a new machine. It is also a different billing code. Auto cpap and cpap are the same billing code I have heard from many on this site. So you may be able to get another machine thru insurance. Though, check prices if you have out of pocket copays that you have to pay. They are a pricey machine. Maybe renting might be an option or I think I read someone recently got to borrow a machine from their DME at no cost.

[robysue]

Ms. L,

I'm glad to hear your husband is getting less aerophagia on the BiPAP. That's also been true for me. I'm running my PR S1 BiPAP Auto in straight BiPAP mode though with fixed IPAP=8 and EPAP=6 though and have set the ramp to 30 minutes with starting pressures of IPAP=7 and EPA=5.

One thing you might have your husband experiment with if he's still having occasional trouble with the aerophagia is Bi-Flex versus the Rise Time setting. (I think both options are still there in Bi-Auto mode, which is what it sounds like your husband is using.) I found that I was much more comfortable with Bi-Flex turned OFF and with Rise Time set to 3. My problem was that I could feel the slight increase in pressure back up to full EPAP during the second part of my exhale on every single breath and it really tickled the back of my throat in a most uncomfortable way. And that sometimes lead to my unintentionally swallowing air.

So check to see whether your husband needs the Bi-Flex turned on. Since his EPAP is already down at 6, he may not need any additional pressure relief at the start of his exhale and turning Bi-Flex off might help the residual aerophagia issues.

I'd report the morning headaches and their association with the days where the IPAP is over 10 to the sleep doctor's office if I were you. Sounds like a strange correlation. And it might be worth limiting the top IPAP for a trial period to see (1) if the morning headaches disappear and (2) there's no increase in AHI overall.

[atruvirgo]

Just watched this video from RESMED and have to say...wish I had seen it a long time ago. It was eye-opening and scared me.

Link http://www.resmed.com/au/patients_and_f ... c=patients

[atruvirgo]

[quote="robysue"][quote="atruvirgo"]
Some questions.

1) How far "out of compliance" are you? In other words, I know you say you hate the CPAP, but how often (or perhaps more honestly, how often) do you actually attempt to sleep with the CPAP? I have used it for as long as 1 week straight and skipped it for months at a time.

2) When you sleep with the CPAP, how long can you stand to have the mask on before you rip it off? about 4-5 hours What leads you to ripping it off?I wake up and feel annoyed and just need to free myself of it.

3) Have you ever slept long enough at one time with the CPAP on to wake up feeling any better just for one day? Yes I actually have.

4) Have you ever slept with the CPAP on enough nights over a long enough time to start to feel a difference in how you feel and function during the daytime? I don't expereince day time sleepiness.

5) Have you ever mentioned the problems with your ears and eyes while using CPAP to your doctor? What did he/she say about it? He has said it is a side effect of CPAP, with no solutions offered. Have you mentioned the aerophagia, the stiff neck, and the acid reflux to your doctor? Did he/she make any suggestions on how to manage these things? Have you tried any of the suggestions? He did not give me any suggestions. Just basically said these compaints are common with CPAP use.

6) Have you tried using a different mask? YES… many, many masks and lots of different types. So far my best fit was a small Soyala Nasal. Now called Easy Fit from Devilbiss.Because if you have really tried to make CPAP work---and that includes working with someone like a nurse or a PA in your sleep doctor's office to try to address some of your problems and maybe also working with your DME to addresss some of the problems---and you've NOT be able to make CPAP work, then yes, your sleep doctor might be willing to authorize a change to an APAP. That may or may not work. If APAP doesn't help, then your doctor might suggest trying a bi-level machine. The DME which is Apria IS A JOKE!! They are so uninformed and have nothing to try on. Everything is in orginal packing and they do not allow trying them on.

[robysue]

Some questions.

1) How far "out of compliance" are you? In other words, I know you say you hate the CPAP, but how often (or perhaps more honestly, how often) do you actually attempt to sleep with the CPAP? I have used it for as long as 1 week straight and skipped it for months at a time.

Ok--you've been able to tolerate straight CPAP for a week at a time. But not much more. I've read your other threads and you are wondering whether a change to either an APAP or BiPAP might help with comfort and aerophagia issues. A week at a time on CPAP may or may not be enough time for your doctor to be willing to say you've given CPAP a fair shot and have "failed" at it. But it's clearly a start.

Are you currenly using CPAP right now? I ask because at least the Remstart M-series Pro you list in your signature is a full data model and so you can at least find out if your current setting is effectively treating the apnea even though it was (is?) also giving you aerophagia the last time you used it. Do you know how to get at the data? Do you know if the current pressure setting is controlling your apnea? In other words do you know your AHI when you use the CPAP? Sometimes just knowing that number can give you an extra bit of motivation to keep going when there's nothing else that seems to make it worth it.

2) When you sleep with the CPAP, how long can you stand to have the mask on before you rip it off? about 4-5 hours What leads you to ripping it off?I wake up and feel annoyed and just need to free myself of it.

I don't mean for this to sound flippant, but you need to do some self analysis here. If you cannot figure out for yourself more precisely what it is about the whole CPAP experience that just annoys you and make you feel like you "just need to free yourself of it", then nobody here will be able to help you make a better go of it the next time around. And very likely, the same vague, unspecified "it annoys me and I just need to free myself of it" feeling will take over in your future attempts at trying to use the machine as well.

So think carefully: What ONE specific niggling little thing about the whole thing bothers you the MOST? In other words, if you could change one small detail, what would the first detail be? And why?

And then what's the NEXT thing you that bothers you the most?

And keep going. Write it all down. Be as specific as you can. At this point MORE detail is better than too little detail. Once it's all written down. Then start looking for patterns. Are there a bunch of things that collectively bother you because they are all related to things that seem to trigger the aerophagia? Is there another collection of things that bother you simply because they add too much inconvenience to your bedtime routine? [That's a group I can really identify with, by the way since a bunch of these things fed my insomnia in the early going.] Are there other things that affect your comfort in bed either directly or indirectly? Once you know the issues with your current setup, you can work on addressing them---both with your current equipment AND with any new equipment should you be lucky enough to persuade your doctor to prescribe a bi-level machine for you.

3) Have you ever slept long enough at one time with the CPAP on to wake up feeling any better just for one day? Yes I actually have.

Well, you're ahead of me here. I've been using a CPAP/APAP/BiPAP for right a four solid months now and I still haven't had a day where I can honesly say I felt better when I woke up. Although Monday came close to being my first day. Hang on to that feeling if you can when you're dealing with the inevitable problems and annoyances of adjusting to xPAP therapy.

4) Have you ever slept with the CPAP on enough nights over a long enough time to start to feel a difference in how you feel and function during the daytime? I don't expereince day time sleepiness.

I'll rephrase the question based on my own (negative) experience then. When you've used CPAP for a week straight, do you find yourself suddenly having problems functioning in the daytime? In other words, is it HARDER to function in the daytime when you are using CPAP than when you are NOT using CPAP?

I know that sounds counter-intuitive. But in the earliest and darkest days of my CPAP treatment, my daytime functioning plummeted. I had virtually no daytime OSA symptoms pre-CPAP, but developed a whole slew of them in the first two weeks of therapy. It is part of what led to the first set of official changes in my prescribed treatment. I did post about it here back in early October.

5) Have you ever mentioned the problems with your ears and eyes while using CPAP to your doctor? What did he/she say about it? He has said it is a side effect of CPAP, with no solutions offered. Have you mentioned the aerophagia, the stiff neck, and the acid reflux to your doctor? Did he/she make any suggestions on how to manage these things? Have you tried any of the suggestions? He did not give me any suggestions. Just basically said these compaints are common with CPAP use.

I think this is an unfortunate case of you needing to push a bit harder to get the doctor's office to respond. Is there a nurse or a PA in the office that works with patients? They often have much better skills in working with patients.

In my case, my daytime functioning ability was deteriorating so rapidly that my husband was alarmed and took things into his own hands at one point and called the sleep doctor's office. I had wisely put his name on the HIPPA form before I started CPAP therapy and (temporarily) lost my marbles. Since things sounded pretty bad, they got me in to see the PA within 24 hours. And in the meantime I decided to start writing down everything that was bugging me about CPAP regardless of how ridiculous or how serious it might be. My list wound up being 11 or 12 handwritten pages. Before going to the appointment, we swung by my office and made a copy for our records so that I could hand the PA the whole list of complaints and still have my own list for talking points at the appointment. She appreciated having it and put it in my file. At the next (non-emergency) follow-up, which was only a week later, we continued to discuss some of the more important and relevant items on that list.

My points are these: Nurses and PAs tend to be more attuned to actually coming up with ideas for patients to try in order to solve some of the more irritating side effect problems. But even doctors tend to have a hard time ignoring things that are written down. And the next time you are talking to the doctor about one or more of these side effects, be brutally honest and demand (politely, but firmly) that he start thinking about ways to help:

You: The CPAP is triggering some really severe problems with acid reflux and aerophagia. Is there anything you can suggest that might help.

Dr: It's a common side effect. You just have to get used to it.

You: I have tried to get used to it. And I cannot. At this point you know that this particular problem has caused me to abandon using the CPAP for months at a time. And so my apnea is essentially untreated because I cannot tolerate this particular side effect. Should I just give up? Or can you help me find a way to minimize this particular side effect? If it's a common side effect, the there must be some some ways that other doctors have helped patients address this issue.

And then, if necessary, you can even consider asking your primary care physician for a referral to a different sleep doctor. Tell your PCP exactly why you want the referral to a new sleep doctor too.

6) Have you tried using a different mask? YES… many, many masks and lots of different types. So far my best fit was a small Soyala Nasal. Now called Easy Fit from Devilbiss.Because if you have really tried to make CPAP work---and that includes working with someone like a nurse or a PA in your sleep doctor's office to try to address some of your problems and maybe also working with your DME to addresss some of the problems---and you've NOT be able to make CPAP work, then yes, your sleep doctor might be willing to authorize a change to an APAP. That may or may not work. If APAP doesn't help, then your doctor might suggest trying a bi-level machine. The DME which is Apria IS A JOKE!! They are so uninformed and have nothing to try on. Everything is in orginal packing and they do not allow trying them on.

*sigh* I always tend to forget that I'm one of the lucky ones with a GOOD DME. But at least you know that "tried different interfaces" can be checked off when it comes to seeing if you can be moved to a bi-level for trying to address the aerophagia.

Good luck on figuring out what your issues with the mask and CPAP are---so you can start positively addressing them.

Good luck in finding a strategy for getting your less than responsive doctor to start offering you ideas on what to do instead of simply telling you that you're on your own.

And at least you'll have plenty of fellow hose heads who will sympathize greatly with your problems in dealing with Apria.