I don't have to feel alone!? Maybe I can do it this time - aerophagia, you shall not defeat me!

[sleepymamadc]

Hi all,

I just found this group, which I think I've needed for the entire 10 years since I was diagnosed with severe OSA (35 arousals/awakenings per hour). I've tried CPAP a couple of times over the years and failed. I've tried the following in order to avoid the CPAP:

-----Frenectomy
-----like 6 different oral appliances
-----Septoplasty & turbinate reduction - helped beautifully for about 3 months then stopped helping
-----Brief stint with didjeridoo which I still have but never play - supposedly it can strengthen muscles and help with apnea LOL

I must try CPAP again and succeed, because I feel so crappy, and I have a baby son, and I'm worried about my heart and my brain. I am so happy to have found this group! I've felt SO ALONE!

I need something like a top pressure of 12-14 to really make a difference. But at the beginning of the night when it starts at 6, I feel like I'm suffocating (or DO suffocate) and tear off the mask. Once it's high enough to help with apneas, I get aerophagia and feel awful and tear off the mask.

When I had my last titration, I took it off from all the air in my belly. The lady came in and made me put it back on. I burped a bunch, put it back on and felt better the next day than I have in a long time, even though it only reduced my apnea by 50%. (WHAT WOULD 100% FEEL LIKE!?!?!? Would I write novels? Become mayor? I function pretty well already but I only dream of what must it feel like to not feel exhausted all the time. Heaven.)

Back at home, I just couldn't keep it on. After trying for 12 nights at various pressures, with and without C-flex, nothing worked and I gave up. (Last fall.)

Now going to try again, since I found your support omg!

I know how to change the settings myself so I can play around with pressures. Doc says I should try 6 to try to get accustomed to it gradually, but I know that's too low.

Should I start at 6 while awake like watching TV? Or just wear it while asleep with the auto-pap at 6-12 and power through? What do you recommend?

Thank youuuuu!!!!

[zonker]

welcome to the zoo!

before i type anything else, please read the following thread-

viewtopic/t172378/Sticky--Newbies-PLEAS ... STING.html

and if you would please, go to the control panel and fill out your equipment. we are all on different combinations of mask and machines. it will help us to give advice if we know yours.

that said, i suffer through aerophagia as well. apparently, you and i are in the minority. i can only say that after three years,it's pretty much gone. i had to do it by slowly increasing my minimum pressure. and i mean s-l-o-w-l-y. my machine, which is a resmed, allows for incremental changes of 0.2 at a time. yet even that can cause me problems.

i literally can take up to two weeks after i adjust to one pressure change to then try another.

but that's just me. others will be along with suggestions for you.

you CAN do this. keep at it.

good luck!

[Pugsy]

Some therapy is better than no therapy.

And sometimes people have to compromise when aerophagia issues can't be optimally managed.

Start using whatever pressure you can use comfortably and actually get some sleep without belly issues messing things up.
Use available software to see exactly what is happening when you use the software that you can actually keep the mask on and sleep and not have belly issues....then let's go from there in deciding what your options are.
See the thread that Zonker linked to.

[sleepymamadc]

Thanks to both of you for replying! I did fill out the equipment and it's in my signature - is there something else I need to do? I read the Newbie post but I must be missing something...

[Pugsy]

I see your equipment just fine. Maybe Zonker couldn't for some reason or just missed it.

[zonker]

I see your equipment just fine. Maybe Zonker couldn't for some reason or just missed it.

jeez! now, not only do i have to read the whole post, i've got to read the sig, too?



to the op, sorry, i wasn't paying attention.

[Pugsy]

jeez! now, not only do i have to read the whole post, i've got to read the sig, too?



to the op, sorry, i wasn't paying attention.

I long ago lost count of the times I missed something somewhere in a post. It goes with the territory. Often I see something that isn't there and totally miss something that is there.
We aren't perfect....if we were I bet we would find some place else to hang out that's probably more fun and less likely to cause stress and headaches..

[zonker]

We aren't perfect....if we were I bet we would find some place else to hang out that's probably more fun and less likely to cause stress and headaches..

now, how could there be some place more fun than this?

[Pugsy]

We aren't perfect....if we were I bet we would find some place else to hang out that's probably more fun and less likely to cause stress and headaches..

now, how could there be some place more fun than this?

Well.....right now and here lately....maybe a dentist chair getting a root canal might be more fun.
People who know me know that I don't do well with discord and fighting and pissing contests. It bothers me a lot to see it and even more so right now because I have additional stressors going on in my personal life. My "patience" column is in the red at the moment.

[zonker]

We aren't perfect....if we were I bet we would find some place else to hang out that's probably more fun and less likely to cause stress and headaches..

now, how could there be some place more fun than this?

Well.....right now and here lately....maybe a dentist chair getting a root canal might be more fun.
People who know me know that I don't do well with discord and fighting and pissing contests. It bothers me a lot to see it and even more so right now because I have additional stressors going on in my personal life. My "patience" column is in the red at the moment.

i understand to what you're referring. but try not to think of it as a "pissing contest". i think things are being said there that need to be said. also, it doesn't affect anyone's therapy. it's guys arguing over who said what and why about sleepyhead software.

but i think people who come here for cpap help aren't going to get caught up in or become scared off. i know you don't like it, but leave it be. try not to get involved and just be YOU.

i don't think it can go on forever.

ETA-to the original poster, sorry to highjack your thread. please feel free to carry on.

we haven't forgotten you!

[sleepymamadc]

Ah, I'm so glad I didn't commit a Newbie sin by leaving out my equipment! I'm eager to obey the rules of the community.

Who among us can possibly read all the things in front of us on the screen every day? I never blame people for missing things, especially in long posts like mine was.

Speaking of missing things on the screen, I don't know what argument you're all referring to, but hopefully it's not too acrimonious.

Do y'all feel like you're going to die at night when you wake up suffocating? Am I the only one?
One thing I've found really amazing on this group is realizing that I'm not the only one who experiences the scary suffocation-startle early in the night.

I'm wondering if others experience other symptoms - I try to tell my partner and my friends sometimes about the crazy sensations I have at night, and no one ever understands what I mean - and often they will say "aren't you just anxious or having a panic attack?" And I'm like "NO YOU DON'T UNDERSTAND I actually stop breathing and feel like I almost die, like multiple times a night, and I wake up sitting up straight in bed, gasping with my heart jumping around like crazy and sometimes smacking myself in the face." I feel like a crazy person - but I'm sensing that you all might have experienced this too? It would feel really relieving to hear that others share some of these experiences.

Meanwhile, I am trying to decide if I should bother easing into the CPAP by using it while awake, or just start at night. I know I just need to start somewhere, but curious if anyone thinks it's worth using it while awake first.

Thanks!

PS I live in Washington, DC and I'm 38.

[zonker]

Meanwhile, I am trying to decide if I should bother easing into the CPAP by using it while awake, or just start at night. I know I just need to start somewhere, but curious if anyone thinks it's worth using it while awake first.

Thanks!

PS I live in Washington, DC and I'm 38.

there is quite a lot to be said for wearing your mask while not in bed. (hey! i made a little rhyme.) your brain is trying to do it's job of protecting you. and your brain just knows that this thing on your face is there to EAT YOU! OMG, run for your life!!

so by wearing out of bed while doing something else helps convince our stupid brains that, yes, we want this thing on our face and no it's not trying to kill us.

you don't even need it connected to the machine. just have it on. after awhile, it will become more and more comfortable.

good luck!

[Pugsy]

Tell us what your current settings are on your machine...we might have some ideas to make it less stressful and not cause the aerophagia monster to come calling and setting up shop.

I do suggest using the mask and machine while awake and under no pressure to fall asleep....like while reading or watching TV.
See how you do comfort wise while awake.

[sleepymamadc]

I know how to change the pressure myself so I can change it to whatever.It's an auto so I can do like 6-14 or something.

The setting is at 6 right now. At my last titration, the report said 12 was the highest pressure reached and it only reduced my AHIs by 50% (this still made me feel like a new woman the next day.) But it says "an optimal pressure was not reached" because a) it was only 50% improvement and b) I didn't tolerate the high pressure well b/c of the aerophagia.

So, they said I should start at 6 to slowly build up to the effective higher pressure. However, when I try to sleep with it at 6, I do not get enough air and suffocate and take it off.

So far it's been two choices: either not enough pressure = suffocation and I take it off within minutes, or too much pressure - I breathe better but my stomach hurts and I take it off within minutes.

I will try it awake at 6 as you all suggest - you're saying that could help my brain not feel the suffocation feeling while asleep at that low pressure? Interesting.

[Pugsy]

Some people do find the lower pressures simply don't move enough air for them to be comfortable. They feel like they are suffocating...of course they aren't but it can sure feel that way and that's all that really matters because if we can't get comfortable we either go to full panic mode or simply can't sleep.

If you can't get comfortable with 6 cm and still feel like you are suffocating...try 7 minimum.
Add in some AFlex exhale relief and see how that feels. Sometimes just adding a little exhale relief makes it feel like more air is moving and thus less stifling/suffocating.
Try all the Flex settings including off...pick whatever feels the best to you no matter what the number.

Don't worry about the maximum setting at the moment...let's get you sleeping comfortably first and then worry about what the pressure might end up needing to be.