Pity Party

[okcpa99]

Pity Party,

Am in need for a little venting today (no pun intended)... Just completed night 7 with my new CPAP. It has been a very rough week. I believe I have had apnea literally my whole life but just was diagnosed last month at the age of 44. When first diagnosed with severe apnea, I felt relieved - not happy that I had sleep apnea - but relieved that my life might improve with cpap. I was determined to be the patient that would adapt to the CPAP very quickly - ha ha!!! The first night proved that wrong!!!! Extreme bloating and pain to the point of not being able to get up and walk was my first experience with the CPAP.

Night 2: slept for about 3 hours with the cpap and once again, had severe bloating.
Nights 3 and 4 were GREAT!!! Pulled the straps tight (which I know is not the right thing to do. Slept for 5.5 hours one night and 7 hours the next with no bloating. Woke up feeling absolutelly better than I have ever felt. Thought it was amazing. Nose was a little red and sore but was happy about my sleep
Night 5: Decided to try to loosen the straps just a bit to make it more comfortable. Caused bloating again... so I bought some cpap mask liners to see if that would help with leaks and subsequent bloating.
Night 6: (with the liners). Felt like I was suffocating. could not fill my lungs with air. Felt as though someone was sitting on my chest. Bloating again.
Night 7 (last night): was a bit stressed because my mother had surgery yesterday with some minor complications. She had to stay at my house and be put on oxygen, therefore, I was a bit apprehensive anyway. But I just sat there looking at my mask for a long while before I actually put it on my face. Did not use the liners. Woke up at 12:00 to check on mom - husband had to take care of my mom because I could hardly walk from the cramping from the gas. Stayed awake for a while and then went back to sleep with the cpap. Slept for 5 more hours and had some bloating when I woke up but not quite as bad.

I do not like passing tons of gas and the cramping associated with the bloating. I do not like wearing the mask. I do not like having the straps on tight. I do not like not being to scratch my nose. I do not like that my husband or kids cannot understand me when I talk. I do not like that I wake my husband up when I have to get up in the middle of the night and it takes me a while to get settled back down with everything working properly. In addition, my husband now says my legs move that crazy at night (which did not happen before). My sleep study showed 87 leg movements over 2 hours prior to cpap and then 555 movments over 5 hours with the cpap (and now my legs are moving all night long). I am starting iron, folate and magnesium today to see if that will help.

I do not like my CPCP, man.... I do not like it, Sam I am.

That is all... Pity party over... I will not let myself be too down. Feel a bit defeated today but tonight is another night and I will try again. I know it takes a while to get used to a cpap - was just hoping to be the star patient and breeze through the transition. My HPI is ranging 2-5 per hour on the cpap and I have a "good" rating on mask fit on the machine.

[kteague]

Am in need for a little venting today (no pun intended)...

Your sense of humor is an asset. If ya gotta be pitiful, at least you can laugh in the midst of it.

I do not like passing tons of gas and the cramping associated with the bloating...

Without knowing the specifics of your treatment, just wondering if it might be acceptable to use a slightly lower pressure as long as the events don't increase too much in number or duration. Maybe you'll find the difference is negligible and it will make your air in the belly better. One point made a difference for me in that respect. Didn't have much of a problem with it till I went from 12 to 13 then had real problems. Even so, after some time the problems subsided enough to be tolerable.

In addition, my husband now says my legs move that crazy at night (which did not happen before). My sleep study showed 87 leg movements over 2 hours prior to cpap and then 555 movments over 5 hours with the cpap (and now my legs are moving all night long). I am starting iron, folate and magnesium today to see if that will help.

Did you have these things tested to see if you were deficient? A baseline would be helpful. Have you read any of the forum conversations on PLMD? I manage mine with a TENS Unit, and I take supplements. When my limb movements were so bad, my attempts to sleep were fitful and agitated and made adjusting to the CPAP a real chore. Just want to encourage you that your CPAP challenges may not seem so formidable when not accompanied by the aggravation of the limb movements.

[robysue]

I understand the need for the pity party.

I had really severe problems with bloating (and cramping) even at relatively low pressures and the resulting insomnia lasted for months.

And the drastic increase in leg movements is troubling, but not unheard of. For some people who have both PLMD and OSA, the untreated OSA arousals wind up "masking" the leg movements---you're waking up so often to restart the breathing with the untreated OSA that the leg movements don't have much of a chance to really get going. But once the CPAP effectively ends the OSA arousals, the excessive leg movements from the PLMD can explode.

You need to let the sleep doc's office know about the excessive leg movements and bloating and cramping and make sure they understand just how severe both things really are. When you talk to the person on the phone, insist on getting a call back from the doc or a nurse or a physician's assistant.

On the leg movements, you need to see the doc and ask about PLMD (Periodic Limb Movement Disorder). The good news is that PLMD can be effectively treated with drugs. And if you have PLMD (and it sounds like you may very well have it), once the leg movements are under control, both you and your hubby should find it easier to get some quality sleep.

The sleep doc (or his nurse) may or may not make any helpful suggestions on what to do about the bloating and cramping, but they need to know about it nonetheless. My first three months of PAPing were miserable mainly due to the bloating, which is called aerophagia: It's caused by swallowing air when you have the mask on. In my case, after two months of trying to make CPAP work, with a switch to APAP and a reduction in pressure, I was still having real problems. At that point, the PA who was responsible for my treatment said she'd talked to the doc about my situation and the only idea they could come up with was a switch to BiPAP. The switch really did help me with my aerophagia problems, although even now, I sometimes wake up with a pretty rigid and swollen stomach. But it's now like once or twice a month instead of 4 or 5 times a week. Big, big difference.

So do let the sleep doc know what's going on and don't just suffer in silence until your first followup.

Things that you can do now that might help reduce the aerophagia include all the standard stuff that people get told for dealing with GERD: Don't eat to close to bed time. Raise the head of the bed by several inches. Sleep on your left side if possible.

Another thing that can affect it is the position of your head and neck. Some people find that if they keep their nose up and their throat extended that helps. But other people (including me) find that position makes aerophagia worse. For me, curling my nose towards my chest seems to cause less aerophagia.

And then there's this: For me, the aerophagia tends to be worse on a night where I'm particularly restless. There's a tendency to swallow when you arouse or awaken in the middle of the night. And the more restless I am, the more air I swallow, which then leads to even more restlessness due to discomfort from the aerophagia, which leads to more swallowing of air, which leads to more aerophagia, etc. etc. It's a really bad "positive feedback loop" to get caught in. And the only fix is to try to figure out a way of reducing the restlessness in the first place. So it could be that all those new leg movements are triggering arousals, which lead to swallowing, which leads to the really bad aerophagia.

So let the sleep doc know what's going on NOW rather than waiting to bring it up at your followup that won't happen for several weeks or months.

[chunkyfrog]

Don't let it beat you. Keep working at it, as it does get easier.
It is better to be temporarily defeated, than permanently deleted.

[herefishy]

My gas and bloating were much improved with more pressure relief, whether yours is called c-flex, a-flex, epr, or whatever, raise it slightly.

[HerbM]

You are actually doing GOOD for those who have trouble with various issues and problems.

So, PITY the poor people who have given up and keep working to make this work for you, and to even, one day, oh my, like your mask.

It is possible to like the mask ONE DAY. And most people who don't give up at least come to be neutral towards it.

It's only those who quit who fail.

Follow all the good advice above and take hear that you are succeeding just by continuing.

[Goofproof]

I don't accept invitations to Pity Parties. All I have to do is look around me at the suffering of others, it allows me to give thanks for my problems. Sleep Apnea is a problem, but if treated correctly it's not the end of your world, many have problems with no good solutions or options, those are the people that rate a Party.

Accept the problems you are given, hopefully Sleep Apnea will be the worst you are given. For 95% Sleep Apnea is treatable, the worst thing that keeps one from sucessful treatment is one's owns De-Nile. "Can't has never succeeded at anything". Air pressure can open your airway, getting the brain to work in your best interest is somepeople can be hard. For me that's a NO BRAINER, my brain likes O2! So R.S.V.P. Declined, I don't do Pity Parties, even to get free food. Jim

[Pugsy]

What are your pressure settings?
Are you using EPR? If so at what setting?
If not...use it as it might offer considerable relief in regards to the aerophagia issues.

[robysue]

Accept the problems you are given, hopefully Sleep Apnea will be the worst you are given. For 95% Sleep Apnea is treatable, the worst thing that keeps one from sucessful treatment is one's owns De-Nile. "Can't has never succeeded at anything".

Goofproof,

There is nothing in the OP's post that even remotely suggests the OP is in denial.

But the OP is facing some really significant problems with getting her CPAP therapy optimized and, at one week into therapy, the (subjective) quality of her sleep has gone way down. The objective quality of her sleep with CPAP may actually be worse than her pre-CPAP sleep as well due to the incredible explosion of limb movements: On her titration study the limb movements went from about 45/hour to about 111/hour. Her hubby is reporting that her legs now never seem to cease moving when she's asleep with the mask on. And the OP is dealing with significant and very painful aerophagia on top of the leg movements.

The need to vent or the need for a pity party is one way some of us cope with the need to do something (such as CPAP) that seems overwhelming because of side affects that were NOT anticipated.

It is NOT easy for some of us to become 100% compliant PAPers and stay that way simply because CPAP, like every other medical therapy, does have some side affects. And aerophagia is one of them. And for a certain percentage of PAPers, continued fragmented and fragile sleep seems to be another. And being told you're in denial because you're complaining of painful side effects and/or less than effective therapy does NOT help at all when you're an overwhelmed newbie.

If you're unlucky enough to have really serious problems with things like additional PLMs, painful aerophagia, or severely fragmented and fragile sleep that starts after you begin CPAP therapy, it becomes a matter of learning how to manage these side effects so that you can stay compliant: I know this from my own hard experience. While I feel somewhat better on most days now, I still do not feel like my old self from 5 years ago.

I'm three and a half years in to PAP therapy; in that time there have been three nights where I have not used my PAP machine: Once was a repeat sleep study without a PAP (at the doc's request), once was when my battery died while camping, and once when I was not sleeping in my own bed (long and irrelevant story behind that one). And in 3.5 years of PAPing, I've yet to sleep through the night without wakes triggered by the pressure or mask discomfort. A good night is when there are no more than 2-4 wakes that probably occur post REM, and I can turn Kaa off and on and get back to sleep within 5-10 minutes of reducing the pressure. A bad night is when I wake up multiple times with a severe stomach ache and I'm ready to throw the damn machine across the room. Fortunately, the good nights far out number the bad nights now, but the bad nights still happen more often than seems reasonable. And during my first 9 months of PAPing, the number of bad nights overwhelmed the number of good nights and it really was very, very difficult to just keep using the damn machine.

In order to get and keep myself compliant during those early dark days, it took a lot of venting here. It sometimes took allowing myself to wallow in self pity for a day or two when things looked like they'd never get better in order to keep on putting the mask on each and every night. And I don't think at any point, I was in denial about either my diagnosis or the necessity of figuring out a way of making this crazy therapy (mostly) work for me.

[zoocrewphoto]

Please let us know what pressures and epr you are using. And have you looked at any data yet? Your S9 autoset has full data, and that may help you figure out if you can make some changes in your settings to reduce the aerophagia without hurting your treatment.

You can use both sleepyhead and ResScan (both are free) to see your data, and posting some screen shots of the data will help people here give you better advice.

[purple]

while the suggestions to use EPR or whichever control your machine provides, and may be sufficient to give you the relief you want.

I had really horrible Aerophagia. I was advised to walk around a bit to get my body to belch it out. but that does not keep it from happening. I wonder, since you said that when you cinched the mask down tight, it was better, if you are using the machine on AUTO. I mean that is OK, just when one has leaks, the machine will keep increasing pressure chasing the leaks.

For myself, I had a huge improvement when I went onto a Bi Level machine. Which is called BiPap for Respironics, or VPAP for Resmed. a Bi Level machine has a different pressure for inhale and another for exhale. Howeve rBi Level machines are more expensive, and may not solve your Aerophagia. If you are rich, then you might arrange to rent one to see if it works for you. With the goal to buy one if you need it. If your means of getting a machine was insurance then getting a bi level machine can be quite difficult. That is insurance companies have all kinds of hoops for one to jump through to get a Bi Level machine.

As you probably also know, http://www.secondwindcpap.com/Used_CPAP.html sells used machines. Then again.

Just using whatever pressure relief your current machine probably has may solve your problem, just like preventing leaks might solve the problem. It is possible to spend a bunch of money for a bi type machine, and it not help a bit.

Pugsy is a far better advisor in how to approach your problem than me. Pugsy is correct in asking for a bit of more information to see what can be done without spending money, or a lot of time. I just wanted to chime in and say there may be options beyond the first one or two mentioned. Keep coming back, and tell us how it is going. There is hope even if the first several things do not solve your issue. Pugsy knows them all.

[okcpa99]

Oh my goodness!!! Thank you all for your comments and suggestions. My heart did a little pitter-patter about my pity party (pun intended) at the support of everyone. I think it will be a little easier to go to bed tonight. I think it just really hit me that there is absolutely no end to this. I will need this for the rest of my life (which hopefully is a very, very long time from now) unlike antibiotics, casts, surgical pain, etc... MOST of the time, those medical issues have an end point that you can shoot for. Granted, I would much rather have sleep apnea than thousands of other medical problems. However, at the moment, this feels like a burden and a punishment for which there is no end. I do have confidence that it will improve and that my life will be better and longer for using the cpap - just going to take some time to get used to the idea and to the process.

As for questions I was asked:

-I have not looked at the data as of yet, have not downloaded the software. I have a Mac so I need that software. I think I got the download link - will have to check and see.
-The EPR was turned off so I turned it on "full time: at a level of "2". Not sure if that is appropriate or not.

Humidity: 4.0
Mode: CPAP (not autoset)
Start Pressure: 5.0
Pressure: 11.0
Climate Control: manual
Sleep Quality: usage
SmartStart: off

[Pugsy]

Sleep Quality: usage

Change this setting from "usage" to "On"....
Usage... give hours of use only...for compliance purposes to satisfy any insurance requirements
On... gives you all the detailed data along with the compliance hours of use. You will want this when you go to look at the software reports. Since you use a Mac..SleepyHead is your only choice and it has a Mac version.
ResScan is Windows only and unless you have a Windows environment set up on your Mac it won't work for you.

EPR set at 2 may help...set at 3 may help more...just play with it to see if it helps.
EPR reduces the pressure on exhale 1 cm per setting...so 2 setting is 2 cm reduction and 3 setting is 3 cm reduction.
It works like a bilevel machine would work except a bilevel machine allows greater reduction than 3.
Sometimes EPR at 2 or 3 will help reduce the aerophagia issues either totally or at least enough that you don't hurt so bad you want to go to the ER.
If EPR set to 3 is still extremely painful for you...do talk to the doctor about it as you may need a bilevel pressure machine.

Go ahead and get the software and be prepared to look at it. Sometimes when we use EPR at 2 or 3 we see an increase in apnea events because of the reduced pressure. We will cross that bridge if we need to. It doesn't always happen and sometimes we have to make little compromises.

[Pugsy]

Oh, I forgot...with the minimum starting pressure of 5...when you do EPR it can't drop below 4 cm so the 2 or 3 setting isn't going to work well. You are effectively only getting 1 cm reduction even with a 2 or 3 setting.
It would kick in as the pressure increased during the night in response to apnea events.
You may need to change the minimum to 6 or 7 to get the full benefit of EPR depending on how you feel and what your pressure wants to spend the most time at.

[okcpa99]

Thank you! Changed it from "usage" to "on"
Increased start pressure to 6.0
Increased EPR to 3.0

Will give it a go tonight! Fingers crossed (and toes, and eyes, and legs, and arms, and anything else that can be crossed)!!!