Done. Finished. I GIVE UP!

SleepyToo2 · Post by **SleepyToo2** » Sat Apr 19, 2014 4:25 pm

dogmycopilot wrote:I waited nearly a year to get a cpap. First month it seemed to help; I was happy with it. Maybe a placebo effect. Second month I developed difficulty breathing unless I loosened it enough so that it would leak just a little. Sleeping much too much -- sometimes 14 hours a day. Sleep doctor is inaccessible. Sleep center's promise to send someone to adjust pressure and take a blood oxygen reading did not materialize. Provider of equipment is inaccessible. Enough is enough! I feel much worse now than I ever did before, and I'm getting really depressed. I'm returning the cpap, even if I have to just leave it on the provider's door step and going it alone. Some things just don't work, especially when they're embedded in a dysfunctional social system of treatment.

Sorry you feel this way. Unfortunately, you are not alone in not getting support. Did the provider of the equipment tell you to wash the mask in baby soap? At least once a week, maybe even daily. The oils from your skin can affect the mask, and it may cause leaking. Maybe you actually need replacement cushions/pillows? Does your machine give you any information about AHI and leaks? Post that information, and someone may be able to help you. Maybe you need a pressure increase/decrease. You really do need to take charge of your treatment to get it working properly. Especially if your provider and sleep doc are inaccessible.

dogmycopilot · Post by **dogmycopilot** » Sat Apr 19, 2014 4:27 pm

That's why I find your responses so objectionable. They're anything but helpful. You're the sort who will discourage people from participating in a useful exchange. Characterizations such as "pathetic" defeat what I take to be the purpose of this forum and are very much out of synch with the helpful responses of others. If you think you're giving something like tough love, you're wrong. When you attack prospective participants as cowards, it's simply unreasonable to expect civility in return. Beyond that, I think the fact that I've worked at this for over a year is evidence that I'm accustomed to being self-reliant when faced with resistance and hoop jumping. People of all kinds do get fed up.

dogmycopilot · Post by **dogmycopilot** » Sat Apr 19, 2014 4:39 pm

dogmycopilot wrote:That's why I find your responses so objectionable, Wulfman. They're anything but helpful. You're the sort who will discourage people from participating in a useful exchange. Characterizations such as "pathetic" defeat what I take to be the purpose of this forum and are very much out of synch with the helpful responses of others. If you think you're giving something like tough love, you're wrong. When you attack prospective participants as cowards, it's simply unreasonable to expect civility in return. Beyond that, I think the fact that I've worked at this for over a year is evidence that I'm accustomed to being self-reliant when faced with resistance and hoop jumping. People of all kinds do get fed up.

robysue · Post by **robysue** » Sat Apr 19, 2014 4:45 pm

dogmycopilot wrote:Enough is enough! I feel much worse now than I ever did before, and I'm getting really depressed. I'm returning the cpap, even if I have to just leave it on the provider's door step and going it alone.

And so exactly why did you decide you had to come to a CPAP support forum to announce that you are DONE and returning the CPAP on your very first post? What exactly did you want to accomplish?

Did you expect people to rally around you and tell you: Atta boy! These machines are a scam and you should return it! ???

Now, if you came here just to rant, that's fine, but you should be aware that folks around here are going to push back and some of them will push back hard---because by and large the members of this forum are folks who understand that CPAP is a NOT scam and who ARE working hard on figuring out a way of making this crazy therapy work for them. And I'll just sit back with some popcorn and enjoy the fireworks.

But if you came here because you know that you've got to figure out a way to make this crazy therapy work, I'm willing to help you help yourself.

And in light of that:

Second month I developed difficulty breathing unless I loosened it enough so that it would leak just a little.

Describe the breathing problems. Problems exhaling? Problems inhaling? Problems feeling like the machine was rushing your breaths? Problems that the mask just felt too confining and that triggered what exactly?

And how did loosening the straps help the breathing problem?

And what does "leak just a little" mean? Sometimes a bit of a leak is not a huge issue. Sometimes even a bit of leaking is disturbing to the sleep. But in order to help, we need to know what kind of mask (make and model) and what kind of machine (make and model) and what the pressure settings are.

Sleeping much too much -- sometimes 14 hours a day.

Lots of folks here have been there and done that. Sometimes you just have to suck it up and force yourself to keep a strict sleep schedule. Not fun, but doable.

Sleep doctor is inaccessible. Sleep center's promise to send someone to adjust pressure and take a blood oxygen reading did not materialize. Provider of equipment is inaccessible.

None of this is our fault. And again, many here have been there and done that.

Your choices:

1) Just give up, return the machine, and continue dealing with the untreated OSA, which will get worse the longer it goes untreated.

2) Repeatedly call the doc, the sleep center, and the provider of the equipment. Every day if necessary. Eventually you'll get a person on the phone. File complaints with those in charge. And get more and more frustrated and angry.

3) Decide to spend some time learning something about your condition and how CPAP treats it. Spend some time figuring out exactly what your problems are in enough detail where you can actually describe them. Post the problems here. Read and re-read the suggestions that folks make about how to address those problems. And decide to do what it takes to make this crazy therapy work. It will require patience and time. And yes, you'll get frustrated and angry at times, but if you put the effort into figuring out how to make this therapy work, eventually you will get to the point where you'll see some benefit in using CPAP night after night.

Enough is enough! I feel much worse now than I ever did before, and I'm getting really depressed.

You won't want to hear this, but: If you are genuinely getting depressed about PAP, you should talk to your primary care doctor. You may want to consider a referral to a therapist of some kind to help you deal with the anger and depression. You won't be the first who's needed that kind of help to finally make the transition to being a successful PAPer.

Wulfman... · Post by **Wulfman...** » Sat Apr 19, 2014 4:51 pm

dogmycopilot wrote:
dogmycopilot wrote:That's why I find your responses so objectionable, Wulfman. They're anything but helpful. You're the sort who will discourage people from participating in a useful exchange. Characterizations such as "pathetic" defeat what I take to be the purpose of this forum and are very much out of synch with the helpful responses of others. If you think you're giving something like tough love, you're wrong. When you attack prospective participants as cowards, it's simply unreasonable to expect civility in return. Beyond that, I think the fact that I've worked at this for over a year is evidence that I'm accustomed to being self-reliant when faced with resistance and hoop jumping. People of all kinds do get fed up.

Just remember, you were the one who started it.

Like I said......I DON'T CARE......if you give up or not.
There's a reason you were prescribed the machine. If you don't want to continue to try to use it, that's YOUR decision.
Your initial post made you sound like a whiner and were ready to give up. I THOUGHT you might possibly respond to some "tough love", but I guess I was wrong. You're just a pathetic quitter who wants to badmouth everyone else instead of trying to take control of your own therapy. The rest of us have (or are working on it).

Den

.

dogmycopilot@yahoo.com · Post by **dogmycopilot@yahoo.com** » Sat Apr 19, 2014 8:24 pm

(Sorry for the delay. I was watching a movie) So, I started it by making a post that you found annoying. If you say so.

It's hard to believe that you don't care, Wulfman -- you're working too hard and getting entirely to emphatic. Next time you don't care, don't respond. You'll be doing everyone a favor.

I think you've been at this so long that you've developed a mean-spirited sense of proprietorship for the forum. Too bad. Just about everyone else seems decent, friendly, and empathetic. I've benefited from their responses, and I thank them.

Sandra_ON · Post by **Sandra_ON** » Sat Apr 19, 2014 9:08 pm

I do so know what you mean. Tonight I"m sitting here considering not using the machine tonight. I'm into month #3, still using my free machine. I've been at a pressure of 9 as recommended by my sleep study but it's causing severe abdominal pain and diarrhea so on Thursday the respiration therapist changed my pressure to 8. Abdominal pain and diarrhea are better but last night I started experiencing breathing problems like I'm not getting enough air. I just don't know what to do.

Wulfman... · Post by **Wulfman...** » Sat Apr 19, 2014 9:14 pm

Sandra_ON wrote:I do so know what you mean. Tonight I"m sitting here considering not using the machine tonight. I'm into month #3, still using my free machine. I've been at a pressure of 9 as recommended by my sleep study but it's causing severe abdominal pain and diarrhea so on Thursday the respiration therapist changed my pressure to 8. Abdominal pain and diarrhea are better but last night I started experiencing breathing problems like I'm not getting enough air. I just don't know what to do.

Are you using EPR and/or Ramp?
What you're experiencing could be "aerophagia"......ingesting air. If you put that word into the Search function above, you'll find lots of discussions about it.

Den

.

cflame1 · Post by **cflame1** » Sat Apr 19, 2014 10:08 pm

Sandra, if you check Robysue's profile, there's a blog in there that you may find helpful... She's had some experience in what you're going through

zoocrewphoto · Post by **zoocrewphoto** » Sat Apr 19, 2014 10:22 pm

Sandra_ON wrote:I do so know what you mean. Tonight I"m sitting here considering not using the machine tonight. I'm into month #3, still using my free machine. I've been at a pressure of 9 as recommended by my sleep study but it's causing severe abdominal pain and diarrhea so on Thursday the respiration therapist changed my pressure to 8. Abdominal pain and diarrhea are better but last night I started experiencing breathing problems like I'm not getting enough air. I just don't know what to do.

Please post what machine you are using and what settings. There may be some setting changes that will help you more. Mainly ramp and exhale relief. Some people also do better with a different mask.

Unfortunately, most doctors and DMEs don't know how to actually sleep with a cpap machine, so they are useless at fixing problems like these. It is more helpful to get advice from forums like this as people have actually been there, done that, and know what worked for them or others.

robysue · Post by **robysue** » Sat Apr 19, 2014 10:49 pm

Sandra_ON wrote: I've been at a pressure of 9 as recommended by my sleep study but it's causing severe abdominal pain and diarrhea so on Thursday the respiration therapist changed my pressure to 8. Abdominal pain and diarrhea are better but last night I started experiencing breathing problems like I'm not getting enough air. I just don't know what to do.

Have you reported the abdominal pain and diarrhea to your sleep doctor?

If not, you need to. And you need to be persistent about complaining about this. When you call the doc's office insist that you get a call back from the doc, a nurse, or a PA. Tell them exactly how bad the abdomnial pain actually is.

While I don't remember having any diaherra in my early and difficult adjustment to CPAP, I do remember having severe abdominal pain. I was calling and talking to the PA almost once a week or so and I had several semi-emergency appointments.

After a reduction in pressure and change to APAP didn't really solve the problem, the PA suggested a trial on BiPAP. First BiPAP titration was more comfortable, but I didn't sleep much. And the pressure setting was still high enough to cause problems with aerophagia. Eventually a switch to a very tight BiPAP Auto range finally brought the aerophagia under control. The BiPAP allows my EPAP pressure to stay much lower than my titrated CPAP pressure, and (in my case) keeping that EPAP nice and low seems to be the trick. The IPAP can go high enough to keep my hypopneas under control and that keeps the OSA well managed without my having to feel like I've swallowed a basketball each night.

It's worth asking the doc abot whether a switch to BiPAP is in order given how bad the abdominal problems are.

Sandra_ON · Post by **Sandra_ON** » Sun Apr 20, 2014 6:54 am

I do have my equipment posted on my profile and don't know why it's not showing up. I have a loaner autoset Resmed S9 with 5i humidifier and I use the Airfit P10 nasal pillows. According to the respiration tech I'm using EPR & ramp.I'm to get my own machine May 12th. Yes, I have tried to talk directly to the sleep doctor and all I get is a call back from the respiration tech. The respiration tech said he talked to the sleep doctor and he has never heard of diarrhea as a side affect of CPAP. I see the sleep doctor on May 12th to get my prescription and if I need a different type of machine I don't want to buy a plain CPAP. Our provincial coverage will cover 75% of the machine but I don't think they will cover a second one if the first one is not right. The respiration technologist said I probably won't qualify for an Autoset since my pressure is so low.

Last night I slept without the machine and just used a nasal strip. I slept fine all night but have a bit of a headache this morning. I apparently only suffer from apnea when I sleep on my back. However with shoulder problems and bursitis in both hips it's getting difficult to sleep on my side. THEN my respiration tech tells me that I would have less mouth breathing if I sleep on my right side. Well, the whole point of CPAP was to NOT sleep on my side.

I thought I was doing really well on CPAP until the ab pain and diarrhea started. I should also mention that I started using Bentonite to keep my mouth moist so I would have less problem with cotton mouth. About 6 wks into using it I discovered that I was having bowel problems - allergy to sorbitol so I've been off that now for about 3 wks. That seems to be the only mouth moisturizer sold around here.

So, I'm in a quandry.

cranblarry · Post by **cranblarry** » Thu Aug 23, 2018 10:03 am

Did you ever resolve the diarrhea? My husband is a new CPAP user and developed diarrhea within 4 days.

Julie · Post by **Julie** » Thu Aug 23, 2018 10:24 am

You're responding to an old poster (the poster long gone) and what or what might not have happened with them still might have no bearing on your husband... please also stay with one thread here (your other one would be best) so we can follow things in sequence.

Midwest_non_sleeper · Post by **Midwest_non_sleeper** » Thu Aug 23, 2018 10:32 am

This post is older than my teenage daughter.

There be necromancers about these parts...

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Mask	Humidifier

Additional Comments: Pressure at 5/11

Mask	Humidifier

Additional Comments: Pressure at 5/11