Two steps backwards -LONG TERM UPDATE pg2

[quote="robysue"]

But last night was really rough.


Then at 1:30AM I woke up with a monstrous stomach ache and feeling like the old stuffed goose again. I also felt exhausted when I woke up. Had to take the mask off
Now, the data was good for the night: During the first ninety minutes, the S9 showed and AHI of 0.0 and a 95% pressure of something like 6.**. So I don't think it was an apneic event that woke me up---it was aerophagia.

I *want* to make this therapy work, but I'm super discouraged at this point in spite of my good AHI numbers. All I want is to feel functional again---the way I was before the first sleep study was done. "] .....end of quote


.......
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.

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.

I did not use my machine last night as I couldn't stand to think about swallowing more air and making this even worse. But like RobySue in her early days, I really want to try to make this work as my quality of life really went down in recent years from lack of good sleep and oxygen at night.

I have 2 issues right now I would appreciate help please.

One is that 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. 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 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.

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.

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

KatieW wrote:I've struggled with aerophagia too. The things that seemed to work for me are:

--cpap mode of 11.8, rather than apap with a narrow range (11-12)
--EPR of 2
--what I eat/drink: no caffeine (coffee or tea), no chocolate, no citrus fruits or juice, no carbonated beverages. Minimize anything fried or spicey, or eat it for lunch instead of dinner.
--a very light dinner, a minimum of 3 hours before bedtime. Occasionally, when that's not possible, I take a Tagamet before eating.
--drink lots of water during the day, to be sure I'm hydrated
--only drink water or herbal tea, 3 hours before bedtime
--just before bed, take 1 or 2 OTC Gas X
--go to sleep on my left side, with a pillow between knees and another pillow for arm/should support. I usually wake up a few hours later, so then I switch to my right side.

Sorry you're feeling poorly, hope all this advice helps out! I generally ditto all of the above and would up the ante by saying avoid food and alcohol 3 to 4 hours before bedtime. Get some form of exercise to help move the gas down and out; I think that aerophagia gas lingers longer in the guts than people suspect. Staying 'regular' helps, especially in the AM, when you can get a lot of gas out of your system quickly. I have no experience with GasX or whatever, but probably be okay for occasional usage. I like that curling up with a bunch of pillows... what did they used to call that? Dutch wife?

[quote="robysue"]Wow, talk about refreshing bad memories---someone resurrects a thread from your early miserable days and it's sort of amazing.......

>>>I am sorry I brought back your whole letter. I was trying to edit but jeez, I am acting like a newbie in every way (and really I am not all that new) But your panic then spoke to the panic I was feeling and I love your response so I am glad I did it. <G>(needless to say I need to find the tutorial on how to quote. jeez)

Wow, it's taken me all this time to locate this response. Dang, what a great response.

I am beginning to think that there is no perfect cure for this aerophagia. That I may have to other issues that contribute to it, so once again, it's getting educated so I can not let my reaction be the problem.

The aerophagia is consistent. There is some everyday, but different amts. And by golly, I have really learned how to fart like a big girl.

Its when it gets stuck at the top of my esophagus and I can't manually force a burp that I get freaked. I feel like I am going to suffocate or something (its probably a control issue and I just need to chill) And I do have this fear about my gerd and aerophagia confusing each other and mixing and matching pipes. I do suspect my gerd may be contributing to the air get sidetracked. I am trying to change my sleep habits but I am still on the run all day long and eating late is really an issue. Working all day and other committments keep me hopping but I am getting close to wondering if I should retire for health reasons and not because I have the perfect portfolio (said tongue in cheek)

I've been using my machine for about a week and have had aerophagia pretty much every day.

The days that it is the worst, however, are days when I am constipated. So I have been making sure to eat some fruit every day to keep myself from getting constipated. I've seen other people mention that as the one thing that seems to make it harder to get rid of the air you have taken in.

I also take a Phazyme before I go to bed. It does seem to help the air keep moving through.

SleepDepraved2 wrote:I've been using my machine for about a week and have had aerophagia pretty much every day.

The days that it is the worst, however, are days when I am constipated. So I have been making sure to eat some fruit every day to keep myself from getting constipated. I've seen other people mention that as the one thing that seems to make it harder to get rid of the air you have taken in.

I also take a Phazyme before I go to bed. It does seem to help the air keep moving through.

Yes, I also discovered my new friend constipation since I started on the bipap. Once I addressed it, I was able to deal with the air better. I have had processing issues for years so this new thing of not going is really a new thing.

I have tried Gas x a few times (I am guessing its our version of Phazme?). I can't say I like it. Yes, I have less gas, but I feel like I am less able to address what I do have. I am still laughing at talking about pooping/non pooping/farting/ non farting with complete strangers.

lliann wrote:

SleepDepraved2 wrote:I've been using my machine for about a week and have had aerophagia pretty much every day.

The days that it is the worst, however, are days when I am constipated. So I have been making sure to eat some fruit every day to keep myself from getting constipated. I've seen other people mention that as the one thing that seems to make it harder to get rid of the air you have taken in.

I also take a Phazyme before I go to bed. It does seem to help the air keep moving through.

Yes, I also discovered my new friend constipation since I started on the bipap. Once I addressed it, I was able to deal with the air better. I have had processing issues for years so this new thing of not going is really a new thing.

I have tried Gas x a few times (I am guessing its our version of Phazme?). I can't say I like it. Yes, I have less gas, but I feel like I am less able to address what I do have. I am still laughing at talking about pooping/non pooping/farting/ non farting with complete strangers.

LOL! You and me both.

The PA at the pulmonologist seemed to think that the aerophagia might qualify me for an APAP, so I'm hoping they say yes. Right now I'm on a BiPAP with an inspiratory pressure of 22 and expiratory of 17. Besides the aerophagia, I am having killer heartburn. The only thing that seems to be touching it is sips of Coca Cola now and then. I'm already on omeprazole because of GERD. I have tried ranitidine and TUMS as well. If it doesn't improve soon, I'm going to ask my internist for some Protonix or Nexium.

I'm flying to Utah next week for a convention and hope I can manage to stay "regular" since traveling tends to make me constipated. Luckily, I'm staying with a friend who has a grocery store right down the street so I can get fresh fruit anytime.

SleepDepraved2 wrote:

lliann wrote:

SleepDepraved2 wrote: LOL! You and me both.

The PA at the pulmonologist seemed to think that the aerophagia might qualify me for an APAP, so I'm hoping they say yes. Right now I'm on a BiPAP with an inspiratory pressure of 22 and expiratory of 17. Besides the aerophagia, I am having killer heartburn. The only thing that seems to be touching it is sips of Coca Cola now and then. I'm already on omeprazole because of GERD. I have tried ranitidine and TUMS as well. If it doesn't improve soon, I'm going to ask my internist for some Protonix or Nexium.

I'm flying to Utah next week for a convention and hope I can manage to stay "regular" since traveling tends to make me constipated. Luckily, I'm staying with a friend who has a grocery store right down the street so I can get fresh fruit anytime.

This is where I get confused. I have the vpap auto set. What more would the apap do? (I wonder since I will have a follow up and want to have all this info to present to them. They kind of know I do my homework and will consider what info I bring in). They know I am having an aerophagia issue because they already lowered my pressure from 15/19(or 19/15 whatever) to 11/15 (I guess the big number is in and the small out.) My ahi readings have not gotten below 5. Last night with the mask squealing, it was 13, so we are still playing pitch till you win.

I also have GERD so I do use Nexium. Expensive little sucker but works for me better than generic. Now that I met my high deductible, its time for me to make the insurance dance for me. LOL!

And nothing more socially pretty than me, the morning after, aerophagia and diet coke. Whoosh!

lliann wrote:
This is where I get confused. I have the vpap auto set. What more would the apap do? (I wonder since I will have a follow up and want to have all this info to present to them. They kind of know I do my homework and will consider what info I bring in). They know I am having an aerophagia issue because they already lowered my pressure from 15/19(or 19/15 whatever) to 11/15 (I guess the big number is in and the small out.) My ahi readings have not gotten below 5. Last night with the mask squealing, it was 13, so we are still playing pitch till you win.

I also have GERD so I do use Nexium. Expensive little sucker but works for me better than generic. Now that I met my high deductible, its time for me to make the insurance dance for me. LOL!

And nothing more socially pretty than me, the morning after, aerophagia and diet coke. Whoosh!

From what I understand, the APAP responds to your breathing and sets the pressure based on it. So while you would still have a minimum and maximum, it will vary up and down based on how much pressure you need. While a VPAP Bilevel machine like I have varies the pressure during ramping, but the rest of the time it is giving me 17 on expiration and 22 on inspiration.

Mine has been very effective. My AHI is below 1 every night. So I think the pressure may be too much and they will either lower it or give me the APAP instead.

My husband retired on June 30, so our insurance changed on July 1st. So I made sure to schedule all procedures and tests before it changed, since we had already met the deductible for our previous insurance. So I know what you're talking about with making the insurance dance for you. Unfortunately, the insurance for the retirement system is not quite as good. Another deductible, more copays, and less medication that is on formulary. I will have to pay out of pocket for brand-only Synthroid, which I have to have, can't take the generic, but they won't pay. Luckily that one isn't so expensive. Just one of my husband's antidepressants is brand name with no generic, but they won't pay for it unless he can prove he has failed the other ones in the step therapy that THEY determine. Sigh... I looked to see if they had Nexium in the formularly, and they don't even HAVE a section on PPIs, so I may be screwed there too.

I'm hoping the aerophagia will have resolved before my trip, because otherwise I will have to spend some quality time in my room before I come out in the morning, LOL! And I've managed to kick Diet Coke, so no help from that! Though it may be worth going back on, if only for the burp value!

From what I understand, the APAP responds to your breathing and sets the pressure based on it. So while you would still have a minimum and maximum, it will vary up and down based on how much pressure you need. While a VPAP Bilevel machine like I have varies the pressure during ramping, but the rest of the time it is giving me 17 on expiration and 22 on inspiration.

Mine has been very effective. My AHI is below 1 every night. So I think the pressure may be too much and they will either lower it or give me the APAP instead.

ah, now I get it. I was interpreting it backwards. So, if I continue to get aerophagia and ahi readings that are over 5 m(which from 33 is a great improvement but still I guess I have AHI envy<g>), I could at some point bring up apap if it seemed to be indicated.

My husband retired on June 30, so our insurance changed on July 1st. So I made sure to schedule all procedures and tests before it changed, since we had already met the deductible for our previous insurance. So I know what you're talking about with making the insurance dance for you.

Exactly! I will be 64 in Sept so I have one year before Medicare to get all this stuff stabilized. Plus I have the rest of the year to have things done that should be paid for sans deductible. I went to Target yesterday and said fill me up. Considering my Symbicort went from 241.78 to 70.00, I think thats the defense dynamic the insurance companies have encouraged. I don't think I will be able to afford nexium long term either so got to get it while I can. All according to policy and procedure of course.

I looked to see if they had Nexium in the formularly, and they don't even HAVE a section on PPIs, so I may be screwed there too.

Yeh, both my Symbicort and Nexium is tier 3 (no generic equivalent that I want). As much as I felt corporate high deductible was anti aging, once the deductible is met, its another story.

I'm hoping the aerophagia will have resolved before my trip, because otherwise I will have to spend some quality time in my room before I come out in the morning, LOL! And I've managed to kick Diet Coke, so no help from that! Though it may be worth going back on, if only for the burp value!

[/quote]

Yeh, my mornings have been given a whole new meaning. Scares the cats tho.

BTW, love your avatar

robysue wrote:Sorry about the fact that I need to whine.

But last night was really rough:

Went to bed just fine and relatively early for me around midnight. Had a bit of trouble falling asleep, but nothing out of the ordinary.

Then at 1:30AM I woke up with a monstrous stomach ache and feeling like the old stuffed goose again. I also felt exhausted when I woke up. Had to take the mask off and wake up my husband because I felt so uncomfortable. Could NOT get comfortable laying down. My husband said my stomach felt like a hard, inflated balloon. It hurt, but did NOT hurt like indigestion/heartburn does. It also hurt to breathe because my *lower* throat (below the adam's apple) felt really dry and scratchy. I sat in bed for two solid hours wide awake because I could not lie down at all. At one point I tried putting the mask back on, but within 5 minutes the stomach was feeling really, really bad. So I took the mask off again and continued to sit straight up in bed (and NOT sleep because the pain was not allowing me to get sleepy.) At another point, I decided to take my husband's advice and just try to get some sleep without the mask. Didn't work since as soon as I lay down, the stomach started hurting really bad again, so I sat back up and spent more time sitting straight up and NOT sleeping. Some time between 3:30 and 4:00 AM, I finally started to get sleepy. I reluctantly put the mask back on (after checking the LCD data) and fell asleep until 8:30. Did not wake up feeling rested at all.

Now, the data was good for the night: During the first ninety minutes, the S9 showed and AHI of 0.0 and a 95% pressure of something like 6.**. So I don't think it was an apneic event that woke me up---it was aerophagia. In the morning, the AHI was 0.1 (which means ONE event all night, given the total time I had the mask on) and a 95% pressure of something like 7.8.

I've been in touch with the PA again. No new suggestions on what to do, except that if my stomach is still feeling hard and full of air to try sleeping sans mask tonight and then watch the problem carefully until my next follow up with her on 11/30. We also talked about how much *more* fatigued I am and how much *more* sleepy I am since starting CPAP. She also decided to order a full set of non-fasting blood work to see if anything turns up that might explain why I am feeling so much worse on CPAP. She also said that some people take months to start to feel better. And she mentioned that if stuff doesn't get better after a certain point, that I may need to talk to the doctor about trying an oral appliance to see if it might work well enough.

I *want* to make this therapy work, but I'm super discouraged at this point in spite of my good AHI numbers. All I want is to feel functional again---the way I was before the first sleep study was done.

But I'd settle for having some kind of an idea of what the OUTSIDE time frame for how long it might be, and so far the PA hasn't been willing to speculate. I'm beginning to think that I might NEVER feel better while using CPAP in spite of my really good AHIs, which usually stay below 1.0 and, except for two nights out of the last 35 have been below 2.0.

Words of encouragement are needed.

Suggestions for dealing with the aerophagia that do NOT include "sleep on your back" are also welcome. My back despises it when I sleep on it, and I don't want to add a serious back ache to the woes I'm already dealing with.

But please don't tell me all the consequences of untreated apnea: I know them. That's why I want to make this therapy work.

And please don't tell me that I had symptoms I didn't know about before starting CPAP: I did NOT fall asleep during the day before and now I'm terrified I'll fall asleep while driving.

robysue maybe you have such terrible aerophagia because of hiatal hernia?

CatherineF wrote:
robysue maybe you have such terrible aerophagia because of hiatal hernia?

Catherine,

The original post by me was from Fall 2010 when I was a newbie with a whole slew of serious adjustment problems that are hinted at in that original post. As I stated in earlier response to Lliann, who revived this thread, things are much better for me now.

lliann wrote:

robysue wrote:Wow, talk about refreshing bad memories---someone resurrects a thread from your early miserable days and it's sort of amazing.......

>>>I am sorry I brought back your whole letter. I was trying to edit but jeez, I am acting like a newbie in every way (and really I am not all that new) But your panic then spoke to the panic I was feeling and I love your response so I am glad I did it. <G>(needless to say I need to find the tutorial on how to quote. jeez)

Don't worry about it. It's useful to me to be reminded of the misery of those early dark days. It lets me realize just how far I've come in the last 22 months. There's nothing like the reminder in your own writing of just how bad things were to make you realize just how good things now are.

And heck, if I captured what you were (are) feeling in my writing, that's a heck of a compliment on my ability to write, isn't it?

Wow, it's taken me all this time to locate this response. Dang, what a great response.

Thank you!

I am beginning to think that there is no perfect cure for this aerophagia. That I may have to other issues that contribute to it, so once again, it's getting educated so I can not let my reaction be the problem.

There's lots of truth to this. Keep it in mind as you continue your adventures in Hosehead Land.

Best of luck!

robysue wrote:

CatherineF wrote:
robysue maybe you have such terrible aerophagia because of hiatal hernia?

Catherine,

The original post by me was from Fall 2010 when I was a newbie with a whole slew of serious adjustment problems that are hinted at in that original post. As I stated in earlier response to Lliann, who revived this thread, things are much better for me now.

Yep, my bad. I am still trying to figure out the website as well as the vpap. But I also felt encouraged that you Rob sue had a bit of a rocky start and yet here you still are helping others.
Last 2 nights my mask wont sit pretty. Wakes me every 1/2 hour or so. On top of, its pinching my nostrils closed(or one of them) (which since I am struggling with the aerophagia really puts me in a pickle. Gonna use those nose strips tonight, see if that helps. My nose is so sensitive and I want to scratch it.

But I'm still doing the deal so fingers crossed.

lliann wrote:

robysue wrote:

CatherineF wrote:
robysue maybe you have such terrible aerophagia because of hiatal hernia?

Catherine,

The original post by me was from Fall 2010 when I was a newbie with a whole slew of serious adjustment problems that are hinted at in that original post. As I stated in earlier response to Lliann, who revived this thread, things are much better for me now.

Yep, my bad. I am still trying to figure out the website as well as the vpap. But I also felt encouraged that you Rob sue had a bit of a rocky start and yet here you still are helping others.
Last 2 nights my mask wont sit pretty. Wakes me every 1/2 hour or so. On top of, its pinching my nostrils closed(or one of them) (which since I am struggling with the aerophagia really puts me in a pickle. Gonna use those nose strips tonight, see if that helps. My nose is so sensitive and I want to scratch it.

But I'm still doing the deal so fingers crossed.

I decided to go ahead and order the mask liners from Pad-A-Cheek, but last night I cut a liner from an old t-shirt to see if it made a difference. OMGosh, it sure did! I fell asleep faster and slept much more soundly because it was harder to feel the mask on my face and had no issues with leaks at all! The only bad part was because I was not waking up as often, the aerophagia had a chance to build up more. When I woke up 4-1/2 hours after I fell asleep I had to do a lot of burping and had some moderate discomfort from distention. But I went right back to sleep and slept for another 2-1/2 hours. All in all, I only woke up twice that I recall.

I cut the basic shape of the mask plus an inch or so all around, then cut a hole in the middle (not too big). I also do use a BreatheRight Extra strip when I sleep, otherwise I always feel like I can't breathe as well. Also, make sure you're putting the mask on by positioning the top on the bridge of your nose, then swinging the mask down into place, pulling the headgear over your head, and then fastening both clips. My RT did not show me this when I picked up my gear.

The other thing is that the cushion works better a little looser, as the elaborate baffles around the edge are meant to be filled with air. When I first got it, I tightened it up way too much, which hurt my face. When your mask isn't too tight, the cushion flexes in and out as you breathe. But you still have leaks, so the liners take care of that.