Ready to cancel

Julie wrote:Why don't you post your settings? The reason we ask is because on occasion someone will have been prescribed a setting possibly a little higher than is strictly necessary, and by lowering it just a couple of degrees, gets rid of their aerophagia. But if you're only on a setting of e.g. 7-8, then there may be other things to think about as there isn't a whole lot of room for lowering it.

She doesn't have any settings yet... no eqp. yet.

viewtopic.php?t=43656

Apparently no equipment yet. Per the above post her titration study is scheduled for Aug 7.
She is looking for (and finding problems and excuses) long before any problems exist. She is reading every possible problem and solution and deciding ahead of time whether that is something she can handle or from what I read, can't handle.

KY up my nose? You bettcha in a heart beat if it stopped a leak or prevented tenderness, but then I have had zero nasal tenderness with the nasal pillows.

Oh well, if someone looks hard enough for every little potential problem, you can pretty much guarantee they will find them.

raggedykat wrote:I'm not looking for issues, they seem to be finding me. And I have had colon cancer, I have a pacemaker and am living with many other health issues so believe me I know what it is like. Just don't know how much more I can take.

I know from your other posts that you have other health issues too and have been through the ringer with less than wonderful doctors. But, you're not alone...there's folks like my dad who also has OSA and also shares the conditions you mentioned and there are folks like me who are catching their OSA early and hope that it will help prevent/reduce some of those looming issues later in life. And I am sure that there are others that have other health issues that make their CPAP therapy challenging in its own way.

I've never been good at inspirational talks, but I wanted to encourage you to at least go to your titration study and see how things go. One step at a time is all that anyone expects you to handle. Try to go in with an open mind and remember that there are a lot of folks here describing every possible problem that could happen....but the posts from people who are more easily successful are much fewer and far between...that is just the nature of the internet sometimes that it highlights the unusual and the negative. The folks that adjusted easily and are experiencing successful therapy are probably less easily seen in places like this.

Try not to worry about aerophagia and other problems until they happen to you...you might be surprised how few problems you encounter and how easily you can adapt. Sure there are some people that have problems with it but there are adjustments that can be made to work around it and still get effective therapy. There are probably others that just notice they burp a little bit more in the morning and others that don't have any problems at all. Who's to say what group you'll be in till you give it a try? And you have us as a resource to help you through whatever may come up.

I guess it comes down to the fact that if you do end up on CPAP it will be a daily decision to do it .... much like taking a pill or vitamin or simply brushing your teeth. With things like colon cancer or a pacemaker, you really don't have much choice after the initial diagnosis and treatment...you end up having things done TO you rather than being in control of your own therapy.

Oh, and also remember that right now you are in a very sleep deprived place which automatically makes things harder to deal with. As you get better sleep your tolerance and ability to handle difficult situations will increase and all the little bumps will feel worth it once you are getting a good sleep. Who knows what else it might help? Once you are getting good sleep and not experiencing the O2 desats, who knows what other areas will be better too. Personally, I have noticed a decrease in some of the joint and other pain I experience...not sure why, but I'm not one to look a gift horse... I avoided CPAP for years because nasal masks scared me (what my dad uses)...I tried a full face at my titration study and haven't looked back!

Sorry this has gotten so long, but if I can do it, I know you can too! Sorry I don't have any cool cheerleader icons, but I am just up here in MD cheering you on.

raggedykat wrote:I'm not going to read any more until after I actually get my equipment and get started. Too much information at one time. I don't want ky jelly up my nose and I don't want to not be able to leave my house because I have gas so bad. I don't want to have to sleep in one position all night listening to my airways trumpeting or peel skin off my nose. And maybe I won't have to. So I will let you guys know how it goes. Thanks.

I think you are having a case of anticipatory anxiety... understandable... particularly after reading medical related forums on the 'net.

Given you don't have any equipment yet... how do you know you will need KY up the nose or have gas?

Why worry and fume over issues you are not sure yet if they will be YOUR issues?

You know before I got my machine and I was reading all the stuff here, I read about taping your mouth and/or using Polygrip to seal the mouth so that nasal masks could be used. I thought "Huh, how awful, I could never do that" "there's gotta be some other way to avoid full face mask"...

Guess what, I did both and it really wasn't nearly as offensive as I thought and I slept very well and hardly noticed either. I don't seem to need to do it now though, thank goodness. Somehow or other I learned to keep my big mouth shut.

What looks or sounds bad in print sometimes is a fleeting problem or not nearly as awful as it is made out to be.
I have had aerophagia once that was uncomfortable and surprisingly that occurred while trying a Hybrid mask. Never any problem with the nasal mask and swallowing air.

Stick stuff up my nose? Heck I would stick my shoe up my nose if it would help. A little moisturizer is no big deal.

Think we could get Manolo Blahnik or Jimmy Choo to design masks?

Raggedy, sometimes the anticipation is worse than the event. And some of the problems you mention are not problems that everyone has. You may be one of the lucky ones who just puts on the mask and goes to sleep for 8hrs, or just needs some minor adjustments along the way. Maybe until you have your sleep study and get your equipment you should refrain from reading the "problem posts" and just concentrate on the "success stories". There are so many of them I read when I began my husband's therapy that gave me courage. It could be a word, a phrase, or some little joke that I held onto, and mostly knowing that I would find help here every step of the way. I would describe myself as a rather "anxious" person with some medical issues and my dear husband as quite disabled and not always "with it", so I am the only provider for his therapy. Not easy. I never thought I'd say this, but seeing the quality of his life improve so much and my learning to be successful on this journey has been a most rewarding experience for me. Please don't give up.

Dori

Have never had aerophagia or KY gel up my nose. BUT, I too am good at finding the bummer value before it actually exists.

I hope you decide to give it a go and I hope it surprises you by being as easy an adaptation as I experienced.

What you are going threw right now we all been there, We all have some kind of health issues, I myself, In 2002 I had to have a pacemaker put
in, I'm on very strong hard pain meds. for my arthrities that knocks me on my ass plus I sleep all the time,Six years ago my husband died I'm
still not over this, But all my friends tell me to get over it. Two years ago my only daughter died leaving four children and her husband behind
she hung herself in her attic. So what I'm trying to say before you give up please think about this first, Sleep Apnea is nothing to play around
with There are people out there that are dieing from this illness, I been on it for awhile now and it's very hard and I mean very hard, There's
a lot of people here to help with all kinds of questions, So please don't give up yet you are loved. And we are here for you.

Don't worry about the gas it will pass

You have been reading too many negative posts!!!! Don't anticipate problems you may never have with cpap.

raggedykat wrote:Yesterday I was feeling really good about getting started on cpap. Now I have discovered aerophagia. No one said anything about aerophagia. I really don't know how this could get much worse...

Ahh Raggedycat, most of us don't swallow air or lube our noses! The most change from my previous way of life (barring wearing the mask & finding a method of dealing with the pressure) is no moistutrizer on my face at night. For many months, all I did was slap on the mask, hit on, and sleep...wonderful, restful sleep! I apply extra moisturizer during the day...big deal. Maybe you'll be as lucky as I was...night mask during PSG and relatively easy adjustment to CPAP.

Issues I have came because I didn't and don't have an efficacy data capable machine; if I had, I wouldn't have gotten in my current pickle 'cause I would have seen increased events on my LED every morning. Doen't mean you'll have similar issues. We come together here because we face challanges we'd like some help figuring out, to share what worked for us, to understand we aren't alone in this strange new xPAP world. Plus, these folks are fun...funny..enjoyable...they enrich my live and give me hope. OK, 'nuff said.

Oh, Honey! Farting on command...anytime of day or night...is not a problem! It's a skill!!!

junie wrote:

Wow, Junie, that's a whole lotta tragedy you've been thru...my best wishes you find warm places in your heart for all the lovely memories of loved ones gone missing. They say time heals...they just don't say how long it takes; I know it takes as long as it takes and no amount of rushing makes it go faster.

And for those of us who never finished grieving for who we used to be pre-apnea...it's a wound that might undermine your postive attitude toward therapy.

We are no longer the people we used to be, we are different, not better, not worse, but different.
Our body is not the body we had, it does not work the way it once did, it is different, not better, not worse, but different.
The challenge is to find how to live in this changed, seeming wounded, body with it's mysterous symptons and this terrifying condition called apnea...ap nee a...a pap nee...a knee ya...it feels like being kneed in the gut, robbed of what worked without requiring a single thought...all gone, lost, become as mist that melts into the very air when heated by the sun.
Fighting it won't return to the you you used to be, won't restore the body you once lived in, both have been changed without your consent...and what is left is different.
Welcome to the new world of you, of xPAP machines, of masks, of hoses, of pressures great and small, of ramp and exhale relief, of chin straps, papCAPS, PADACHEEKS...more like inexplicable magic than anything knowable and you incapable of more than gaping openmouthed in horror and wonder at all you must now do to survive sleeping.

Well, the bright side of looking on the dark side is the relief one feels when the worse does not come to pass. Even so, can't get back the energy expended on all the "what if" worrying. Every time I've had questionable test results that needed follow up, in my mind I rehearsed the possible outcomes. For me that just feels like being prepared. Forethinking for me becomes a problem if I assign fate status to my imaginings. Thankfully the worst case scenarios are seldom realized. I like to think things through "just in case" while someone else will do better with assuming the best and dealing with any issues if and when they arise. I'd prefer to be more like that.

How we deal with these things is part personality type and part life experiences. There was a period of time in my young adult years when so much had happened that fear of things that could happen interfered with me enjoying life as I should. While I never recaptured my innocence, I worked very hard at regaining balance in my thought life, and reigning in my imaginations. Sometimes "ignorance is bliss" works, others, "forewarned is forearmed". I'm a bottom line kind of person, for me that is, "I can handle anything that is required of me today, so if I am overwhelmed, I need to purge what I've taken on that is either not required or not yet required."

Most days I can convince myself.

Kathy