Need Your Story to Get APAP!

[OldLincoln]

As before, I am caught in the middle of a doctor and DME who do not get along. After not getting anywhere I have an appointment with the doc Monday AM to settle it.

I read another post that I cannot find where the member wrote a letter to his doc and.or the doc wrote a letter justifying the APAP and got what he needed.

In this case I'm fighting with the doc more than the DME. Every time I've pushed for an auto he says he cannot justify one. I need to write a letter to the doc (goes in file) that explains more than the discomfort of the gas and need some help.

Does anybody have something published about the effects of air with CPAP?
How about links to posts where the improvement of areo..(sp) from CPAP to APAP - or a fresh post.

It's obvious the sleep doc doesn't know much about his industry and I will be changing as soon as I get set up, so perhaps the empirical evidence will help convince him.

Remember it's Monday AM that I see him so I need to put it together tomorrow. You all have been so helpful and I'm sure in another few years I'll be further along myself.

[Wulfman]

As before, I am caught in the middle of a doctor and DME who do not get along. After not getting anywhere I have an appointment with the doc Monday AM to settle it.

I read another post that I cannot find where the member wrote a letter to his doc and.or the doc wrote a letter justifying the APAP and got what he needed.

In this case I'm fighting with the doc more than the DME. Every time I've pushed for an auto he says he cannot justify one. I need to write a letter to the doc (goes in file) that explains more than the discomfort of the gas and need some help.

Does anybody have something published about the effects of air with CPAP?
How about links to posts where the improvement of areo..(sp) from CPAP to APAP - or a fresh post.

It's obvious the sleep doc doesn't know much about his industry and I will be changing as soon as I get set up, so perhaps the empirical evidence will help convince him.

Remember it's Monday AM that I see him so I need to put it together tomorrow. You all have been so helpful and I'm sure in another few years I'll be further along myself.

Well, I've got some bad news for ya. The preponderance of evidence shows that straight-pressure CPAP gives better therapy.
It could be that the studies were flawed in that the pressure ranges were set 4 - 20 cm on the APAPs, but I've found the same thing in the use of my Autos in a range of pressures. Also, many other forum users have switched their Autos to single pressure after they found the same thing.

What you REALLY NEED is a fully-data-capable machine.

My advice would be to get that data-capable CPAP machine and see how you adapt to the therapy, first. Then, down the road, when you're going to get a backup machine......buy one out-of-pocket from an online supplier. You're just going to get a sore head from beating it against the wall with the situation you have now.


Den

[rested gal]

In this case I'm fighting with the doc more than the DME. Every time I've pushed for an auto he says he cannot justify one. I need to write a letter to the doc (goes in file) that explains more than the discomfort of the gas and need some help.

Lincoln, given that the doctor is already refusing to prescribe an autopap for you, I'm afraid that any research anyone turns up for you in favor of "autopap" would simply be countered by the doctor with a study that says otherwise. He's already made up his mind.

The only thing I can think of that might get him to "give you a break" would be if an aerophagia problem went beyond just being a gassy annoyance the next day. And even beyond a little discomfort (which should, imho, be reason enough, but some doctors don't have a lot of empathy.

If aerophagia is so painful (and it sure can be) that a person tells their doctor, "The air filling my stomach has become so painful by the middle of the night, I have to turn the machine off when the pain wakes me. It's so bad, I can barely move to get the mask off to stop the air pushing into me. Doctor, this has become excruciating. I really, really want to do the treatment, but it's gotten to the point that I just can't take the pain from the bloating it's causing. I don't want to quit, but the pain is increasing and it's gotten so bad during the last weeks that I have to stop using it. Is there any machine you know of that might not do this so badly? The pain has become unbearable in the night. "

If the doctor won't order a different machine, but instead orders that the pressure be reduced a cm or two, and have the results monitored to see how that goes, he'll be at least trying to help.

If the doctor recommends seeing an ENT about a possibly damaged LES (lower esophageal sphincter muscle) that might need repair, he's smarter than the average bear, but still is being unnecessarily stubborn about trying "another machine."

But if the doctor tells the person, "You just have to get used to it if you can" or suggests something like taking "Gas-X" or "don't eat 4 hours before bedtime", you'll know the guy is a sorry excuse for a sleep doctor.

Since you've already been asking him specifically for an autopap, and he's already said "no", I doubt that he's going to change his mind. Unfortunately, he's probably pretty well set in stone by now where you're concerned.

I'd be looking for a used autopap to buy privately. Or I'd use my "cpap" Rx to buy an autopap. The Rx doesn't have to say "autopap" to buy one from cpap.com. As long as the word "cpap" is on it, it's good for an autopap at cpap.com.

[ww]

As before, I am caught in the middle of a doctor and DME who do not get along. After not getting anywhere I have an appointment with the doc Monday AM to settle it.

There is no difference in the billing code for CPAP or AutoPap, so the only thing really being discussed in the profit for the DME. When my DME called and said they were bringing out a CPAP, I asked them to bring the Respironics APAP with AFlex and Humidifier. They said they couldn't without the doctor ok, so I had them call my family doctor who oked the autopap. The DME does not care whether the sleep doctor or family doctor oks it, so I would try that route and not bug the sleep doctor any further. Tell the DME to set it up in CPAP mode at the prescribed level to start with. I am also agreeing that the autopap is nice to do a little testing with, but so far CPAP at constant pressure level has yielded the best results for me. You may want to find out in advance which machines the DME stocks, and if it is Respironics (which are very good) you will probably be unsuccessful getting a ResMed machine. I did not ask for a ResMed Ultra Mirage Full Face Mask to start with, but it sure solves a lot of problems that nasal pillow or nasal masks can't if you occasionally breath through your mouth and then get zero therapy that night.

[bap40]

You can also go to your regular doctor and have him prescribe the machine you want. This is what I ended up having to do. My doc was more than willing to provide me with the machine of my choice, knowing that I would be more likely to use a machine I wanted...

[snoregirl]

Make sure that you are really gaining money from using your insurance and local DME. If you are not, then take the rental back and buy online.

[OldLincoln]

Thanks for the tips to date. I have been researching most of the day and found several interesting medical articles including one where a child got a ruptured colon from chronic aerophagia. Others cautioning about how the colon is susceptible to ruptures from pneumatic distension. And another that states chronic aerophagia can lead to serious disease and death.

I also now have several postings of how the auto greatly reduced or eliminated the problem. One doctor wrote about aerophagia that it's impossible to swallow when your teeth are not together. If that's true seems to me a mouth device should stop it all night long.

Also found articles regarding the relationship of GERD to the problem. Since I've had serious GERD for many years that helps explain a few things also.

I'm still cooking and intend to continue until I have a pretty tight case. Then a cover letter and packaging and off to the doc Monday. Perhaps those who say I'm wasting my time are right, but I'm tired of these egotistical numskulls taking my money seriously but not me.

[OldLincoln]

[quote="snoregirl"]Make sure that you are really gaining money from using your insurance and local DME. If you are not, then take the rental back and buy online.

[rested gal]

One doctor wrote about aerophagia that it's impossible to swallow when your teeth are not together. If that's true seems to me a mouth device should stop it all night long.

People certainly can swallow with mouth open and teeth not together. I can't imagine what doctor would say that.

Besides, aerophagia is not really about literally "swallowing" air, as in the action of swallowing, imho. More often it's about air getting pushed down through a weak LES (lower esophageal sphincter) -- with no active swallowing happening at all.

[bigk]

Resmed did a study and publish an article on their website about APAP being better than CPAP. But I suggest you just find a compliant doctor.

[Needsdecaf]

Make sure that you are really gaining money from using your insurance and local DME. If you are not, then take the rental back and buy online.

Definitely check with your insurance on this.

In my case, an in-network provider is $0 out of pocket cost. $0 deduct, 100% coverage.

Out of network is 80% coverage, $300 deduct.

For my setup, I would have been out of pocket over $400.

It was worth it to spend the time to work with the Dr, change the DME, etc. to get what I wanted.

Oh, BTW, the Dr's office called me and asked "why don't you want a machine, it says in your file you refused the machine?" I said "look at your file, I just refused this DME." "Oh. Why?" And boy, did she get an earful. Her response? "Holy crap, I wouldn't have put up with that either! It's your money and your insurance!"

Score one for the good guys.

[OldLincoln]

Wow, thanks a lot for some encouraging feedback. I am really amazed at what I'm learning out there from published medical studies and papers.

Even if nothing comes out of this I will have leaned more about this condition I have and the treatment.

[OldLincoln]

One doctor wrote about aerophagia that it's impossible to swallow when your teeth are not together. If that's true seems to me a mouth device should stop it all night long.

People certainly can swallow with mouth open and teeth not together. I can't imagine what doctor would say that.

Besides, aerophagia is not really about literally "swallowing" air, as in the action of swallowing, imho. More often it's about air getting pushed down through a weak LES (lower esophageal sphincter) -- with no active swallowing happening at all.

Note that I wrote "if it is true". I didn't even link or copy that as it was a doctor's response on one of those "Ask the Doctor" forums.

Aerophagia probably isn't the right term. My research found "gastric air insufflation - the injection of air into the stomach" to better fit what's going on. I found it used mainly in regard to anesthesiology (where they put a mask with positive air flow on your face - ring a bell?). Strange how they take that so seriously but not aerophagia which they relate to anxiety, chewing gum, eating to fast and bad habits. The only docs I found that took that seriously were in regard to mentally challenged individuals that had no control over it. Guess that pretty well describes us, huh?

I now have more solid evidence than I need, most of which came from published medical articles from MedLine and others. Next is to pull it all together in a constructive logical layout. What's odd is that there are several solid studies of APAP/CPAP with APAP being superior. One found otherwise and they set the APAP range 4 - 20 and measured heart items. I don't believe the APAP can react fast enough to catch them. In the forum here, I learned a narrow APAP range works best. Anyway, now I don't see why most mid level pressure machines aren't prescribed as auto.

[Guest]

Also, many other forum users have switched their Autos to single pressure after they found the same thing.

I wonder just how accurate this is given the preponderance of apap's. I'm a newby here Wulman - how old is this data? I've been struggling with different settings and am torn between apap/cpap. Time for new poll?

[rested gal]

Note that I wrote "if it is true". I didn't even link or copy that as it was a doctor's response on one of those "Ask the Doctor" forums.

I didn't mean my reply as fussing at you as if you had "swallowed" that (pun intended! LOL ) or as not believing you had come across a doctor writing that.

I very much believe some doctor might say such a stupid thing. They're human and fallible, too. LOL!! My "I can't believe a doctor would..." was shaking my head in disgust about a "doctor" saying that. A doctor just should know a leeeetle more about physiology than for one of them to say something like that, imho. My firing off was not directed toward you at all, Lincoln, although I can see that it could look like that in my post.

Looks like you're gathering plenty of good info through your research, Lincoln. Getting your ducks in a row! Good luck!