CPAP might not be working, don't know what to do.

[gregkdc1]

Hello I am a long time lurker and first time poster to this forum and I am very concerned with my current health and severe obstructive sleep apnea.
I was diagnosed about 2.5 years ago and even though the numbers looked good from the follow up sleep study I don't think over all the treatment has had any real benefit for me. My initial numbers of 55 episodes per minute and O2 levels down in the mid seventies went to 4 episodes and O2 in the nineties.
I am a 39 year old male and think that I have had OSA my entire life. I remember as a kid people telling me that I quit breathing while sleeping sometimes for quite a while and that I would make all kinds of weird sounds along with snoring. My health has never really been that great, as a kid I was wicked skinny and I couldn't gain weight, later as an adult, from around the age of 25, I can't stop gaining weight, have high cholesterol, have been diagnosed with IBS, have secondary low testosterone and I'm osteoporotic. I don't eat tons of food only a little more then my wife who weighs 115 lbs and have found it nearly impossible for me to loose weight, in fact I have gained about 35 lbs since the time I started CPAP almost 3 years ago , I'm up to 218 and I'm 5'11".
Anyways after almost 3 years of treatment I thought that I would see some positive changes in any or all of these clinical problems but I still feel tired all the time and my lab work comes up with bad news, in fact things are steadily getting worse. I don't know what to do and I have already spent thousands of dollars with doctors trying to figure out what is wrong with me.
The only thing that makes sense is a lifetime of severe OSA it accounts for all of my symptoms right up to being super skinny as a kid to osteoporosis for a middle age male. I am considering surgery but don't know how I would pay for it. Appliances aren't recommended for severe apnea what are my options? I think the problem is that even though my numbers look good from the study I still wake up many many times a night from the CPAP itself and so my quality of sleep still suffers and defeats the whole purpose of the CPAP. Greg

[Sclark08]

Gregkdc1
Your situation sounds almost like mine. I am a 64 year old female 20lbs overweight with moderate apnea. First sleep study ahi 23. With cpap ahi2.
I developed COPD from years of smoking so sleep Dr switched me to Vpap rather than Cpap. People with COPD have a hard time exhaling so VPap whete you can adjust the incoming and outgoing air sounded like the tight thing to do.
6 months into VPap my ahi is virtually nonexistent but my blood pressure is going nuts and I still feel exhausted a lot of the time. I wasted $1500 on an oral appliance. Did nothing for me. I guess some good must be happening with my ahi being whete it should but You just wonder could I do better. I have read volumes about how surgery for the most part doesn't do much for the long haul.
I suppose I will continue my treatment try to lose some weight Nd hope for a new treatment gor apnea. Best of luck to you

[Pugsy]

So exactly which machine are you using now?

You know just because they got "great numbers" in the cpap titration sleep study doesn't mean that they are working now.
It was a one night thing 3 years ago...maybe they didn't get it perfectly right (my titration sleep study didn't) or maybe something has changed.

It's also very possible that your unwanted symptoms are totally unrelated to sleep apnea and the machine can't fix problems unrelated to sleep apnea but you need to find out if your cpap therapy is at least optimal or not.

So exactly which model machine (and if you don't know look for model numbers either on the bottom or back of machine) and which mask are you using?
Hopefully the model machine is a full data model and we can get you some software that will at least help evaluate the therapy side of things.

[gregkdc1]

It is a Resmed "S9" I think? It does have a SD card in the back, are there free programs to see how things are going? The thing is that yes they got great numbers but I never really felt any relief from the treatment. Your are told to give it time, give it time but nothing has ever really changed. I thought I would at least see some changes in some of my other symptoms or the sleepiness but nothing. Believe me I have looked into possible causes and reasons for the other problems but nobody can explain them, not the endocrinologist, GP, gastroenterologist and on an on. It just so happens that long term OSA can put you at risk for all of my symptoms. The only thing that I have noticed from CPAP is that I no longer have sleep paralysis.

[palerider]

It is a Resmed "S9" I think? It does have a SD card in the back, are there free programs to see how things are going?

there are a good 13 different base models of the s9. which?

look on the bottom of the label on the back of the blower, what's the REF number?

[Julie]

What are your pressures set at?

[Wulfman...]

Hello I am a long time lurker and first time poster to this forum and I am very concerned with my current health and severe obstructive sleep apnea.
I was diagnosed about 2.5 years ago and even though the numbers looked good from the follow up sleep study I don't think over all the treatment has had any real benefit for me. My initial numbers of 55 episodes per minute and O2 levels down in the mid seventies went to 4 episodes and O2 in the nineties.
I am a 39 year old male and think that I have had OSA my entire life. I remember as a kid people telling me that I quit breathing while sleeping sometimes for quite a while and that I would make all kinds of weird sounds along with snoring. My health has never really been that great, as a kid I was wicked skinny and I couldn't gain weight, later as an adult, from around the age of 25, I can't stop gaining weight, have high cholesterol, have been diagnosed with IBS, have secondary low testosterone and I'm osteoporotic. I don't eat tons of food only a little more then my wife who weighs 115 lbs and have found it nearly impossible for me to loose weight, in fact I have gained about 35 lbs since the time I started CPAP almost 3 years ago , I'm up to 218 and I'm 5'11".
Anyways after almost 3 years of treatment I thought that I would see some positive changes in any or all of these clinical problems but I still feel tired all the time and my lab work comes up with bad news, in fact things are steadily getting worse. I don't know what to do and I have already spent thousands of dollars with doctors trying to figure out what is wrong with me.
The only thing that makes sense is a lifetime of severe OSA it accounts for all of my symptoms right up to being super skinny as a kid to osteoporosis for a middle age male. I am considering surgery but don't know how I would pay for it. Appliances aren't recommended for severe apnea what are my options? I think the problem is that even though my numbers look good from the study I still wake up many many times a night from the CPAP itself and so my quality of sleep still suffers and defeats the whole purpose of the CPAP. Greg

If you've been a long time lurker, you would have seen that most of the forum members have their equipment and settings in their profiles.
I don't see any equipment or settings listed in your profile. Please add the information so we can take a stab at trying to answer your questions and concerns.

If you're using an S9 Autoset, are you using a range of pressures? If so, the pressure changes may be disturbing your sleep and your minimum pressure setting may be suboptimal for therapy.

If you're using a nasal mask, you may be leaking your therapy air out of your mouth while you're sleeping. Ever wake up with a dry mouth?
Along with that, if you're using a "high" humidifier setting, it may be causing nasal congestion and contributing to mouth-breathing or mouth-leaking.

Also, if you're a long time lurker, you should know that there is software available to use (with data-capable machines) and how to get information out of your machine. And, becoming an informed user can help you figure out what's causing your lack of improvement.

Will be awaiting more information from you.


Den

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[gregkdc1]

I can't get the exact model number at the moment because I am at work. I remember that the machine is set to 13 cm H2O, and I do wake up from time to time with a dry mouth. One of the biggest problems with the machine is that I find it frequently gives me gas which is kind of a cruel joke compounding my IBS. Anyway I have worn the mask every night for almost 3 years now with very little benefit. I don't know why I have waited so long to look into if the therapy has been effective or not until now, I guess I have been focused on all of my other symptoms when I was told the CPAP was working. I did have a follow up appointment with a respiratory therapist some time after I started to make sure everything was working and he said it all looked great. I do know that with the mask on I am up many times a night and wonder if it is keeping me awake and countering any help I would be getting from the machine. So yes numbers may have been good but does that really mean anything if you are awake all night?

[Pugsy]

So yes numbers may have been good but does that really mean anything if you are awake all night?

Nope doesn't mean much.
The best numbers (both AHI and leak) doesn't mean squat if you don't sleep well...as in enough hours of sleep or your sleep is highly fragmented from whatever...leaks, mask comfort, dog barking, or meds mess with how you feel or sleep, etc.
There's only so much the machine can fix.

[kaiasgram]

I can't get the exact model number at the moment because I am at work. I remember that the machine is set to 13 cm H2O, and I do wake up from time to time with a dry mouth. One of the biggest problems with the machine is that I find it frequently gives me gas which is kind of a cruel joke compounding my IBS. Anyway I have worn the mask every night for almost 3 years now with very little benefit. I don't know why I have waited so long to look into if the therapy has been effective or not until now, I guess I have been focused on all of my other symptoms when I was told the CPAP was working. I did have a follow up appointment with a respiratory therapist some time after I started to make sure everything was working and he said it all looked great. I do know that with the mask on I am up many times a night and wonder if it is keeping me awake and countering any help I would be getting from the machine. So yes numbers may have been good but does that really mean anything if you are awake all night?

HI Greg --Believe it or not, sometimes patients are told "everything looks great" and "you're doing really well" at their follow-up appointments when in fact the doctor/RT has no idea how you're doing because your machine does not record any therapy data, only how many hours the machine has been used. We call these machines "bricks." I'm hoping this is not your story.

You may not need to turn the machine over -- look by the Start/Stop button and see if it says Escape, Elite, Escape Auto, or Autoset. If it says VPAP then you need to get the REF number too.

* You can become a little more familiar with the settings and menus on your machine by watching the brief S9 tutorial I have linked to in my signature box.

[Wulfman...]

I can't get the exact model number at the moment because I am at work. I remember that the machine is set to 13 cm H2O, and I do wake up from time to time with a dry mouth. One of the biggest problems with the machine is that I find it frequently gives me gas which is kind of a cruel joke compounding my IBS. Anyway I have worn the mask every night for almost 3 years now with very little benefit. I don't know why I have waited so long to look into if the therapy has been effective or not until now, I guess I have been focused on all of my other symptoms when I was told the CPAP was working. I did have a follow up appointment with a respiratory therapist some time after I started to make sure everything was working and he said it all looked great. I do know that with the mask on I am up many times a night and wonder if it is keeping me awake and countering any help I would be getting from the machine. So yes numbers may have been good but does that really mean anything if you are awake all night?

What "numbers"? If they were only checked "way back when", that doesn't mean diddly squat.

From your description, I would say your therapy is minimally effective (if at all). You NEED TO get software and SEE what's going on during the night. If, in fact, your machine is non-data-capable, that would mean the RT was lying to you. Mostly what they care about is that you're using the machine (so they can keep collecting the insurance payments) and don't give a rip about whether it's effective or not. The "gas" you referred to is called "aerophagia" and has been discussed MANY times on the forum. If you do a forum Search on that word, you'll see......and possibly some of the ways to avoid it.

We'll be waiting for you to update your information.


Den

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[gregkdc1]

The type of machine is a Resmed S9 36005A. I appreciate the help and have more too look into with the aerophagia and getting a program to read the SD card. Greg

[palerider]

The type of machine is a Resmed S9 36005A. I appreciate the help and have more too look into with the aerophagia and getting a program to read the SD card. Greg

that's a resmed s9 autoset, please update your hardware listing in your profile.

excellent machine for standard sleep apnea, btw.

[Drowsy Dancer]

The type of machine is a Resmed S9 36005A. I appreciate the help and have more too look into with the aerophagia and getting a program to read the SD card. Greg

SleepyHead software, free and open source. Look at the pinned threads at the top of the forum.

[borgready]

You say you have dry mouth a lot. If you can't breath through you nose easily, then cpap is pretty much useless. Pay attention to if you can breath through your nose before you go to bed and if you wake up in the night. Using the machine can make you nose swell shut. Note any restricted air flow through the nose on the left and right nostrils. Use some Afrin to open your nose up temporarily for the night.

If you don't get a sun tan, then start getting one. Check the vitamin D level if your pale white. Low vitamin D screws with the automatic sleeping mechanisms of the brain.

If you get the airways open, you might want to try Bipap as it seems easier to breath with.