Newbie, gastric sufflation, setting pressure lower

[roster]

.... I'm thinking I'll shop for a DME who will work with me to get what I need. The doctor reluctantly gave me a CPAP prescription, which, I think, will allow me to get an APAP? ....

Good luck with the brick-and-mortar DMEs. Most (but there are exceptions) of them want to give you the cheapest basic machine without data capability and many of them don't know the machines data capabilities and only like to work with docile uneducated patients.

Look at these machines: https://www.cpap.com/advanced-find-cpap ... ting-CPAPS . Click on the "Learn More" button on each machine and read all of it. As a general rule, if that site says a machine has software as an option, then it is a machine that is fully data-capable.

My personal recommendation at this point (new models are regularly being introduced) is this bundle https://www.cpap.com/productpage-bundle ... undle.html .

But let some other machine owners chime in with their recommendations.

[OldLincoln]

The doctor reluctantly gave me a CPAP prescription, which, I think, will allow me to get an APAP?

My experience was that the DME would not fill the CPAP Rx with an APAP. They said they would fill the RX as written, period. So when I had my discussion with the doc and he agreed to an APAP, I handed him a piece of paper with the exact machine and humidifier I wanted. He wrote it that way and the DME had to fill it exactly. They were not happy but did it.

If the doc wants to fight it, he may be easier if you tell him you'll get it filled elsewhere if it makes him more comfortable. In CA it is illegal for a sleep doc to directly sell equipment probably just for this reason. The profit motive outweighs patient needs.

Also, I got mine a couple years ago and there are several good APAP machines. Most users are happy with theirs and can recommend them with a smile. I do recommend that should you chose a Respironics Auto M that you get the model with AFlex. For me it makes breathing under pressure like breathing during the day - very natural. That said, if I were getting a new machine I'd be stumped now looking for the latest technology. So good luck.

[dtsm]

Why not post your location and maybe someone here can recommend a good DME in the same area?
If you're in southwestern CT, I have both a very good DME and sleep center.

[TSSleepy]

Yeah APAP helped me.

A pressure of 10 stops most events without blowing me up, but leaves me vulnerable to nasty apneas in my REM sleep. A pressure of 12 stops almost all events, but leaves me bloated and feeling horrible.

An APAP of 10-12 leaves me averaging around 10.5 for the night, but jumps briefly up to 11.5-12.0 sometimes when I am in REM and have my worst apneas. The lower average pressure seemed to really help.

(ps: I should mention that I don't leave my APAP at 10-20, because sometimes it runs up to 15-18 and causes all sorts of unnecessary mask leaks and chaos that wreck my sleep).

[nursedeborah]

Now I know what's been going on with my stomach! it was so bad last night I had to go to bed at 6:30 pm, curled up in a ball.

I have a neurogentic bowel and bladder to due a neve being snipped when I had a back surgery in 2005, but this has been so
different. I thought maybe I was getting the stomach flu.

Guess I need to fill out my profile and tell you all what kind of equipment I do have. I am on a Cpap, and my real complain
is just getting a good seal, and I learned something here elsewhere earlier! I am going to stop washing it dialy!!!

Debbie

[SactoGranny]

It is frightening to read that doctors still have no clue about whether their CPAP patients are suffering from gas as a result of aerophagia (swallowing air) or gastric insufflation (caused by the constant pressure of a straight PAP machine).

Want to know if your gas may be caused by gastric insufflation? Do you have a hital hernia and/or suffer from acid reflux? If your answer is "yes" it is very likely that your gas is caused by insufflation.

For those of us with hiatal hernias, gastric insufflation can be the result of air being pumped straight into the stomach during CPAP therapy. Since the flap that prevents air from entering the stomach while breathing (and keeps gastric acid out of the esophagus) is weak, it cannot stand up to the pressures put on it by a straight CPAP machine. This machine will force air first into the stomach until the pressure reaches stasis with the pressure in the lungs, and then maintain that pressure as long as it is on. The gas continues into the intestines, which creates bloating and pain in the morning. Sleeping with the head raised will help belch out some of the gas during the night but it will simply return once the mask is replaced and the CPAP is turned on again.

If you think your problem is gastric insufflation, see your doctor or sleep lab as soon as possible. Too many patients are prone to discontinuing PAP therapy because of the pain and discomfort. One solution may be use of an auto or bi-level machine. If you find that your medical insurance is less than enthusiastic about supporting you with the proper equipment or retesting you to see what would relieve or eliminate the gas, keep pushing until you get help. This may even require that you file a grievance or threaten to do so if you cannot get the support you need.

Don't give up. The tide has been turning toward working with patients to solve their problems with CPAP therapy. New machines and masks are coming out each day and the medical field is taking note of the importance of treating apnea more aggressively. You shouldn't have to put up with substandard treatment or having to suffer because of substandard (at least for your case) equipment.

It took me nearly a year and a half to find out what was wrong and another six months to get the right equipment.

[RocketScientist]

Thanks to those of you who have posted back to me, sent PM's, etc. It really is great having folks who I can consult with as I go through this.

Current status is I still have some abdominal pain, so my GP suggested a CT scan with the drinkable contrast (yummy!). Didn't see anything on that, so I'm going for a consult with a GI doc, maybe do a colonoscopy? I remain concerned about some damage from the pressure. As someone mentioned, I do have a history of some acid reflux, which may be why my leakage pressure into my gut is lower?

I see the sleep doc this week. Thanks to some articles sent by OldLincoln, I think I can make the case for an APAP prescription. Once I know my gut is OK, I hope to get back on board with an APAP machine.

In the mean time, I've done some homework on machines and DME's. A local office of a national DME chain (Apria) will give me a Resmed S8 Autoset II and humidifier, but only if my prescription specifically says APAP (with ranges) and not just CPAP. They seem nice and are willing to work with me on pressure ranges, etc. I feel I could probably adjust things myself with the proper documentation. They won't give me a card reader or software, saying I have to go to the office to get readouts. This makes it harder for me to tweak it myself since I won't have the feedback. I suspect I can get a card reader and software somewhere, although it seems to be getting scarce for the Resmed machines (and most new machines...). CPAP.com has a Respironics M Series Auto with A-Flex bundle with humidifier, card reader, and software. I like the bundle since I have the freedom to tweak with feedback. Some reviews aren't crazy about the software, but it seems to have basic functionality for tweaking?

I'm still sorting out how I feel about going with a local in-network (with my insurance, that is) DME, with them filing the insurance, etc, or going mailorder and me filing the insurance, etc. Other than the paperwork aspects, I guess a local DME would be able to tweak things for me, but they won't enable me to tweak for myself. Fortunately, my insurance seems to be quite willing to work with me whichever option I choose.

DME recommendations (I'm on the west side of Cleveland, OH) and feedback on the two options for machines I mentioned would be appreciated. If someone knows a ready source for the Resmed card reader and software, that would help with that option.

Thanks again for the collective wisdom of this group. I much appreciate your comments and input.

RS

[brain_cloud]

... He dismissed it as aerophagia, and said just to give it time to get used to it. ... I can't "get used to" being in pain for a day and very bloated every time I use the CPAP.

Not to defend your doctor, but just as a data point for you, I also had these symptoms the first couple of days using my titrated pressure (14). I also experimented with APAP with some success. But my point is this. I no longer am bothered when I run my machine as straight CPAP at 14. So you may find there is something to the notion that you will "get used to it".

[roster]

A local office of a national DME chain (Apria) will give me a Resmed S8 Autoset II and humidifier, but only if my prescription specifically says APAP (with ranges) and not just CPAP. They seem nice and are willing to work with me on pressure ranges, etc. I feel I could probably adjust things myself with the proper documentation. They won't give me a card reader or software, saying I have to go to the office to get readouts. This makes it harder for me to tweak it myself since I won't have the feedback. I suspect I can get a card reader and software somewhere, although it seems to be getting scarce for the Resmed machines (and most new machines...).
RS

I prefer the Respironics software over the ResMed. However, if the ResMed machine is paid for by your insurance, I would get the ResMed software and be happy with it. Paying for a Resprionics machine cannot be justified by the difference in the two softwares, IMO.