Pity Party

[HerbM]

"no end to this"

Depends on what you mean by "this" -- no end to using your CPAP probably.

But there is likely an end to it being so hard on you.

Remember, most of the people here had trouble getting started, or even continuing.

Many others quit and a few lucky souls found it just worked right off the bat.

But most people faced troubles similar to your -- some worse, some easier.

The ones here who send you love and help are the ones that stayed with it and figure out not just how to make it work, but how to make it liveable and even comfortable.

You will too, when you just stick with it and keep solving problems that keep it from being easy for you too.

Everyone here want to help you BECAUSE you are trying and working to not just continue but to also figure out how to make it comfortable and to learn to do whatever is necessary to get past the troubles.

There is an end to that. You will reach that but then you will have a comfortable CPAP experience to help you live a longer and healthier -- AND HAPPIER LIFE.

This is you support team -- use it.

Pity the poor people who don't know about all this help and love.

[okcpa99]

Downloaded the software and this is what I got:

CPAP Statistics as of February 24, 2014

Details Most Recent Last 7 Days
AHI 2.67 3.60
Average Leaks 0.49 4.31
95% Leaks 2.40 21.60

[OboeVet]

I hope you picked up on the common threads:
1. You are not alone in this "new normal."
2. There is a dizzying number of variables and "zillions" of combinations and permutations to dial in what your body needs.
3. You may shift your opinion on who is your best caregiver. It will be you! Docs, PA's, claims handlers & their utilization stooges, device vendors, etc. all have their own priorities and axes to grind. If you tend to timid when given your 90 seconds with Mighty Divines (MD) bring along an advocate who isn't.
4. Resist reaching "I guess this is as good as it gets" too soon. Persevere!

By the way, I realize not every mask works on every face. Sadly there is no easily accessible lending library to test out the hundreds of styles, sizes and fits.

All the best in sifting through all the information and advice you get here and from your medical team.

Don (6 months xPAP trying 4th mask)

[DoriC]

Downloaded the software and this is what I got:

CPAP Statistics as of February 24, 2014

Details Most Recent Last 7 Days
AHI 2.67 3.60
Average Leaks 0.49 4.31
95% Leaks 2.40 21.60

Just so you know, an AHI <5.0 is considered good therapy and a Leak under 24L is great. EPR turned on should help with the bloating so all you have to do is find the right mask, that's always the challenge. Keep us updated and good luck.

[chunkyfrog]

Another little thing (or two) that helps me with gas:
--sleeping on my left side helps prevent air from getting trapped in the stomach.
--sitting up and having a drink of water helps me burp if I wake up feeling inflated.

[mgaggie]

I had terrible aerophagia when I first started CPAP. I found I had to eat my evening meal no later than 7.30pm ( go to bed at 10pm and hopefully asleep by 10.30). Certain foods would make the aerophagia worse and also the amount of food made a big difference.

[SleepingUgly]

CPAP is not for the timid, is it?

Regarding your leg movements, your doctor should consider ordering some lab work: a FULL iron panel (not just ferritin), as well as folate, magnesium, and B12. If you're deficient in any of those, you can replete it and your limb movements may improve.

BTW, on your sleep report, do you have a graph that shows the leg movements and at what CPAP pressure they occurred? It's possible that a lot of your leg movements occurred at insufficient CPAP pressures, but looked good at your titrated pressure. If that's the case, your leg movements are more likely due to respiratory issues at lower pressures (are you using ramp?). If they worsened at your titrated pressure, that should have been a red flag to your doctor. Either way, you need the lab work to see if it's an easily fixable problem (i.e., a deficiency in iron or folate or whatever).

Also, were your limb movements associated with arousals? Your report should say what # per hour were associated with arousals vs. not. Arousals can cause aerophagia, as can higher pressures, etc.

[DoriC]

My husband always had leg movements pre/cpap and the sleep study showed lots of leg movements and medication was recommended. Our Primary took a wait and see approach because he felt they were caused by arousals and apnea events, and the leg movements did stop after he adjusted to his cpap.

[dave1013]

OP, do not get discouraged and thanks for posting your experience.

The part about limb movement resonated with me. I have that issue, at least my wife says I do. And it affects her sleep. Upon telling my doc about it, she suggested I try a magnesium supplement called "Nature's Calm". It's a powder that you mix in a pint of water and drink before going to sleep. Tastes slightly like the "Sweetart" candy, which I happen to like. Wife says it has made a difference. I was twtiching to beat the band and she said the supplementation knocked it way down. Did not wipe it out but she says I am not twitching nearly as much now.

It's just another parameter that might bear your looking into.

[okcpa99]

Has been a while since I wrote. Have taken a couple of steps forward... baby steps but at least it is a forward direction

Stopped using the liners because I felt they were always moving. Got a "pad-a-cheek" cover, which I like more.

Am still waking up literally every 2 hours. Was getting very exhausted. Gave up last night and slept without it for most of the night (stopped wearing it after waking up at midnight and 2:00am). Got to curl up with my blankey and sleep in peace. I know - I know... that was not the "right" decision but I was getting cranky and I needed to sleep in peace - even if it meant apnea.

My aerophagia is still a major problem for me, although I have not been "paralyzed" in pain. have been able to get up and walk around a little better. Hate, hate, hate that I have to "get rid of the air". It is embarrassing and I want desperately want it to stop.

My leak rate is good and my AHI is good. Now I just have to get rid of the side effects and discomfort.

Gee, that does not sound so good... not sleeping, still having aerophagia and gave up on the cpap last night. However, I feel a bit more rested tonight and am ready to give it another try. At least it is a weekend and I can nap (yes, with my cpap) if needed.