Wow, talk about refreshing bad memories---someone resurrects a thread from your early miserable days and it's sort of amazing.
Lliann,
You write:
lliann wrote:
I am to fly out today. I was going to take my machine but not if I am going to struggle with aerophagia when I am aware from my home base and doctors.
I am afraid to fly with air pressure issues (mine and theirs) so I am considering not going (family wedding so this would not be good). Maybe I am overreacting but I am unfamiliar with this discomfort of aeropaghia and I feel like I can't breathe right, I can't trust my body right now.
Pack the machine and take it with you. If you
have the machine, you can make the choice about whether to use it once you are there. If you don't have the machine, you are committing yourself to sleeping PAPless for the duration of the trip. So pack the machine and delay the decision about sleeping with the machine each night until bedtime. And you can consider
trying to use the machine each night. But if you're not asleep withing 15-20 minutes of laying down with the machine, then revisit the question of whether to use the machine the rest of night
before the aerophagia raises it's ugly head.
I have been up most of the night with this aerophagia discomfort. reading post after post and it seems I am like many others. New to vpap auto set after no success for years with cpap. Could not tolerate the leaks or the inability to breathe out. This new vpap bilevel is the first thing I could tolerate for any length of time and I have felt an increased awakeness that has felt like a long lost friend.
As discouraging as it sounds,
give it more time, and the aerophagia may start to abate without you having to make lots and lots more changes. More on this in a bit.
But this air thing is killer. I have been up all night. Couldn't move air, couldn't burp, couldn't expel. For those who have had this, you know how awful this is. I took Gas X but saw no measurable relief.
and
And 2. Please...is there anything I can do to speed this air through my system and blow out one end or other. I have acid reflux so I am concerned about forced burping. But the other end is not interested in negotiating with me at this time.
I have always had a very difficult time burping and expelling air or gas trapped in my stomach. The only time I ever had as much stomach pain as the early aerophagia episodes was when I was 7-9 months pregnant with my daughter and she had nestled up against my stomach and would wallop it hard every time I tried to eat anything.
The only things that every marginally work for me when I get serious gas or aerophagia are sitting up straight; standing or walking if I can stand the pain; and having my husband give me a very tight bear hug from behind with his fists pushing against the distended stomach to encourage some very minor burping or farting. To encourage farting, you can try hugging a pillow with your head down and your butt up in the air. (It's a modified "child's position" if you are familiar with yoga.) It won't always work and sometimes the stomach pain is too intense. In that case, get out of the position and sit straight up.
In my case I've learned that my best strategy for fighting aerophagia is prevention. And how do I work to prevent the aerophagia?
My primary tool for preventing aerophaia is to NOT lie down at the beginning of the night fighting to get to sleep for long periods of time. My own tolerance is about 20 minutes of mask time while awake. If I'm not asleep within 20 minutes and I start to feel even the slightest hint of aerophagia, I get up out of bed and do something else for awhile until I'm very, very sleepy (again) and I'm calm enough to go back to bed and mask up and try again. If I can get to sleep in the first place within about 20 minutes (5-10 is better), then most nights, aerophagia is NOT a problem for me.
My secondary set of tools for preventing aerophagia are lifestyle changes: Watching what I eat at supper time and during the evening is part of it. Giving up caffeine is part of it. And making sure I get an appropriate amount of exercise is part of it. A nightly long walk (40-50 minutes) on most nights also seems to help the aerophagia as well as being necessary for dealing with the osteoporosis. In other words, all those things that you are doing for your reflux/GERD are things I had to learn how to do in an effort to prevent the aerophagia.
But I have been reading and I am sensing that this stuff is uncomfortable, but is that it?. I felt like I was going to die last night and really got afraid. So any advice would be very welcomed. Thank you.
Yes, I remember nights where I thought I was going to die from the pain. It is scary to wake up feeling like that. As for advice, all I can give you a more detailed explanation of how the aerophagia issues wound up playing out long term for me as I very, very slowly became fully adjusted to therapy. And some of the factors in bringing my aerophagia under control may seem like irrelevant factors. But bear with me.
RobySue's story of what finally brought her seriously uncomfortable and intolerable aerophagia under control in the long term
In looking back on my misadventures with severe, intolerable aerophagia, what do I think really finally made a difference? First a bit of Truth in Advertising: I can't say I'm aerophagia-free these days. But "really bad" nights have become rare AND the definition of "really bad" has changed. What's "really bad" to me now would have seemed like a picnic during the bad dark days when I started this thread. On a daily basis my aerophagia is mild or nonexistent. I'll have a few days here and there where I wake up in the morning with some major discomfort, but it is usually not a major issue. Every day on my sleep logs I use a Rate My Aerophagia Pain Scale from 0=No aerophagia to 5=Crippling, scary areophagia. On the vast majority of days, my Aerophagia rating is between 0 and 2; I'd say that my typical Aerophagia score is between 0.5 and 1.0---minor discomfort that does not last all day or night. I'll get a day 3.5+ day for aerophagia maybe once or twice a month at most.
My biggest allies in winning the War with Aerophagia (for the most part) seem to be in no particular order:
- Time, time, time to get used to sleeping with the machine. Yeah, this seems like a cop-out when you're at the beginning and you're in serious pain more days/nights than not. But it's amazing what our bodies can adjust to---if we give them enough time. In my case, I needed substantially longer time than most people just to figure out how to sleep with the dang machine every night. My body had to get used to a whole new set of sensory stimuli at the beginning. And each and every one of those physical stimuli coming from the machine was keeping me awake and making me feel tired and irritable and sleepless at night and sleepy during the daytime. And I do think it took my tongue a long time to learn where it needed to be in order to effectively block off my oral cavity from the CPAP air. And once air was not finding its way into my mouth and puffing out my cheeks, there was much less incentive to swallow during the night to try to get the air out of the mouth. And less night time swallowing leads to less aerophagia, which leads to better sleep, which leads to less night time swallowing .....
- The change from CPAP/APAP to BiPAP to Auto BiPAP and the eventual (doctor approved) reduction in my pressures from straight CPAP at 9cm to Auto BiPaP with Min EPAP = 4 and Max IPAP = 8. My BiPAP (the Repironics version of the Resmed VPAP you are using) has made a huge difference in my comfort. The switch did not immediately eliminate the aerophagia, but it did take the edge off of it and once my pressures were finally changed to the range I use now, the frequent severe aerophagia began to wane. In other words, with the passage of time, the switch to bi-level, and the dial-winging with the PA to converge on my current Auto range of min EPAP = 4, max IPAP = 8, I simply don't have the really bad "hard as a rock and it looks like I swallowed a basketball" killer aerophagia anymore. "Really bad" now means: Stomach is somewhat distended---if you poke around you can tell, but it's no longer visibly distended. And there's pressure in the stomach, but it's not "rock hard" anymore. Nowadays, I do get some noticeable aerophagia on night when my median EPAP goes above 5 or 5.5. But that's actually a pretty rare occurrence. Aerophagia can also raise it's ugly head when my IPAP sits at 8.0 for most of the night---as in about 80% of the night. But this is a bit more hit or miss than the EPAP being above 5 for half the night.
- Finally learning how to sleep in a position very, very close to my favorite pre-CPAP position. Pre-CPAP I strongly preferred sleeping on my left side curled in a very tight ball with my chin pretty close to my chest and my head stuck in my hubby's armpit. During the dark days, side sleeping was still challenging with the hose to manage, but getting my head into a comfortable position was the real issue. I'd read somewhere that sleeping with a straight neck (chin away from your chest) was supposed to help aerophagia, probably because the airway is nice and straight. I was sleeping like that as much as possible, and getting pretty bad aerophagia along with a pretty bad neckache. Once elana suggested that the "chin down" position might help the aerophagia instead of hurting it, I started working of adjusting my PAP sleeping position to come as close as I could to my pre-CPAP position. And somewhat surprisingly, sleeping with my head in my pre-CPAP position seemed to help tremendously. It took me a very long time, but I've also found a way to butt my head against my hubby's side (with my head completely under the covers) as a replacement for snuggling into his underarm. It's a satisfactory position emotionally and a very comfortable position for me physically. Which encourages me to get to sleep quickly.
- Winning the War on Insomnia (for the most part). A huge amount of my aerophagia problem was (and is) triggered by being very restless and/or awake with the mask on. Even now, I cannot tolerate lying in bed for more than about 20 minutes without getting to sleep at the beginning of the night. If it takes longer than that, I'm at high risk for a bad aerophagia night because I'll feel it starting to raise its ugly head by around 20-25 minutes after I lay down if I'm not sound asleep. And the worst of my rare days of serious aerophagia seem to be tightly correlated to bad insomnia nights---whether it's an prolonged time to sleep or a night with lots of serious tossing and turning and WASO episodes. While at the beginning of CPAP therapy, I tended to blame the CPAP for causing the aerophagia and the aerophagia for causing the wakes; I've since come to believe that there's a bad feedback loop between wakes and aerophagia. In my case it seems that the more I wake up or arouse during the night, the more I tend to (unconsciously swallow) and the more I swallow, the more problems I have with aerophagia. (See this thread for DeltaDave's interesting take on how wakes can cause aerophagia.) As the insomnia has waned, the restlessness (and swallowing) at the very beginning of the night has just about disappeared. As the insomnia has waned, the number (and lengths) of the night time wakes (and swallowing) has decreased quite a bit. As the swallowing has gone down, the aerophagia has decreased to "not a serious problem" on a daily basis.
- Dietary changes. Giving up caffeine was important. Watching both what I eat for supper and WHEN I eat supper is important. Avoiding late night snacks altogether or very carefully considering what I can eat within a couple of hours of bedtime. All of these remain important parts of my anti-aerophagia lifestyle.
Best of luck in your own battle with aerophagia