CPAP trouble / Self Prescribe APAP?

I've been using CPAP for a few weeks now, but not very successfully. Some nights are awesome, and others are horrible. I think it depends on how well I am able to breath through my nose that night - which ranges from poor to very poor - I have an ENT appointment next month to discuss that issue. I started with a nasal mask, but I complained that the pressure around my nose was causing my nasal congestion to worsen, so they switched me to a nasal pillow. At the same time I complained about excessive belching and bloating in the night and all day long, so the doctor changed my pressure from 14 to 12 at the same time as switching my mask.

I have had 0 good nights since changing from 14 down to 12. They let me keep the old mask and I switched back to it because I cannot seem to keep the nasal pillow mask on at night. I also turned on the alarm on the CPAP machine so it beeps if it falls of and I can be sure to put it back on. I was in bed for 12 hours last night, but somehow the machine says I only got 3.5 hours of therapy time. The night before I logged 8 hours of therapy time, but was still very tired all day and fell asleep a couple of times when I should not have.

Of course I need to talk to my doctor, whom I left a voice mail for... but he is closed for the holiday.

Anyhow, I am considering changing my pressure on my own before I sleep tonight so I can actually sleep tonight, maybe.

When I found the clinician setup menu, I found that the machine has an Auto PAP trial mode and I can set a range and even set an A-flex number like an APAP machine that I've read about...

What do you folks think of me self-prescribing APAP? Is that a good idea? Even at a pressure of 14 before it was lowered to 12, I was walking up some in the night, so I specualte at some times I need even more than 14 and at other times I need less. Maybe I should try it with the default range of 12-20?

Should I try something else? Should I wait for the doctor? Should I just go back to 14 until I hear from him? Is trying APAP ok? Thoughts?

Thanks for the help!

HI cpapn00b,

Welcome to the forum. Can you please use the link in my signature to fill out your equipment profile so that people can better tailor their advice to your situation?

We definitely are not against adjusting your pressure on your own but at the same time, you need to first look at the situation overall to make sure a pressure change is warranted. But regarding your machine, do you have an apap or one that can only be set in cpap mode once the 30 day trial period has expired?

Of course, I am not a doctor but it also sounds like your problems could be due to not having the right mask. Have you considered trying a full face mask to see if that helps? You might want to look at our host site, https://www.cpap.com and look at the write ups for various ones to see what might be a possibility.

I would also look at this sleepyhead tutorial by Pugsy, viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html and download the program so you have data to look at in analyzing whether a pressure change is needed or not in the long term. Meanwhile, if you want to try the auto range just to see what would happen for one night, I don't see anything wrong with that. But make sure that eventually, you have data to really see what is going on.

As far as waiting for your doctor, that is up to you. Some people chose to and other people try pressure changes on their own. Ideally, everyone would be working closely with their doctor in partnership but then there is reality.

Hope this helps.

49er

cpapn00b wrote:I've been using CPAP for a few weeks now, but not very successfully. Some nights are awesome, and others are horrible. I think it depends on how well I am able to breath through my nose that night - which ranges from poor to very poor - I have an ENT appointment next month to discuss that issue. I started with a nasal mask, but I complained that the pressure around my nose was causing my nasal congestion to worsen, so they switched me to a nasal pillow. At the same time I complained about excessive belching and bloating in the night and all day long, so the doctor changed my pressure from 14 to 12 at the same time as switching my mask.

I have had 0 good nights since changing from 14 down to 12. They let me keep the old mask and I switched back to it because I cannot seem to keep the nasal pillow mask on at night. I also turned on the alarm on the CPAP machine so it beeps if it falls of and I can be sure to put it back on. I was in bed for 12 hours last night, but somehow the machine says I only got 3.5 hours of therapy time. The night before I logged 8 hours of therapy time, but was still very tired all day and fell asleep a couple of times when I should not have.

Of course I need to talk to my doctor, whom I left a voice mail for... but he is closed for the holiday.

Anyhow, I am considering changing my pressure on my own before I sleep tonight so I can actually sleep tonight, maybe.

When I found the clinician setup menu, I found that the machine has an Auto PAP trial mode and I can set a range and even set an A-flex number like an APAP machine that I've read about...

What do you folks think of me self-prescribing APAP? Is that a good idea? Even at a pressure of 14 before it was lowered to 12, I was walking up some in the night, so I specualte at some times I need even more than 14 and at other times I need less. Maybe I should try it with the default range of 12-20?

Should I try something else? Should I wait for the doctor? Should I just go back to 14 until I hear from him? Is trying APAP ok? Thoughts?

Thanks for the help!

I don't know which machine you have but some machines re-set to a new day at noon -- on that 12-hour night you mentioned, did you sleep past noon? If so it may be why your machine only showed 3.5 hours when you checked it on wake-up. The first 8-9 hours are recorded in your machine but they are logged in as "last night." The last 3 hours are actually "today" on your machine. Make sense?

It's not clear that your lousy sleep and daytime tiredness is because of your pressure or the pressure change. Might be best to examine leaks and a breakdown of apnea events and such before you start changing your pressure. If you can tell us more about your equipment and post some screenshots of your sleep data, we may be able to offer some constructive ideas.

It's early in your cpap 'journey' so take heart -- there's usually an adjustment and fine-tuning phase early on.

I believe I have a PR System One REMstar Pro CPAP Machine with AutoIQ. I had a more basic System One, but I took it back a couple of weeks ago because of a problem and they were out of the basic model, so they gave me this one.

So, I only have a 30 day trial of auto.

My AHI, according to the machine had been running around 40.

I went ahead and turned on auto last night and my AHI was .3 and I got nearly 8 hours of therapy time. In the middle of the night I was having such a hard time with my nasal congestion that I pulled off the mask and the alarm went off, but then I switched my mask from the nasal mask t the nasal cushion and without the pressure around my nose, the congestion went away after using the mask for a bit.

I do have a belly full of air this morning, but at least I slept.

After the first half of my sleep, it sad the 90% pressure was 16, and when I just now got up, it said the 90% pressure was 15.5...

My throat is pretty sore this morning, I suspect my mouth was open for some of the night. I am going to ask for a hybrid mask to avoid that pressure around my nose but also to cover my mouth. Well see if the equipment company will get me one, small company that didn't have many masks on hand...

When I woke up, my sinuses were more open than ever, with my cpap on... 15 minutes later, totally blocked, worse than normal. Is that usual?

Thanks for the thoughts everyone. If there is anything else I should consider, please let me know. I think the trick now is to explain to the doctor that I went into the secret menu and setup auto on my own and now I want an auto machine

49er wrote: We definitely are not against adjusting your pressure on your own

49er

So now you are offering treatment advice on behalf of all the forum members in addition to your role as moral arbiter?

Aw Granny - 49'er is so benign compared to others here... don't pick on him (for telling the truth anyhow ).

ChicagoGranny wrote:

49er wrote: We definitely are not against adjusting your pressure on your own

49er

So now you are offering treatment advice on behalf of all the forum members in addition to your role as moral arbiter?

You took what I said out of context CG. Go back and reread my post.

49er

Julie wrote:Aw Granny - 49'er is so benign compared to others here... don't pick on him (for telling the truth anyhow ).

Thanks Julie. I am a she by the way:)

49er

Dear Noob...I think that explaining your use of auto to the doctor will vary depending on your relationship with the doctor and the doctor's personality. Some of the doctor's described here may not even know that that exists and wouldn't object...in that case say "Hey, it was Christmas, I was playing with my new toy and found this, tried it and it worked sooo well!" Doctor will think you are pretty clever and wanting to help you out will prescribe the machine you want.

My doctor is a fart...he'd think "Are you trying to treat yourself? If you learn too much, you won't allow me to cheat you and the insurance!" In which case, return the machine and run run run. Or say "Look, I want the prescription, I will buy the machine on my own" - I did this and MAGICALLY, he offers the machine that I want. amazing.

cpapn00b wrote:I believe I have a PR System One REMstar Pro CPAP Machine with AutoIQ. I had a more basic System One, but I took it back a couple of weeks ago because of a problem and they were out of the basic model, so they gave me this one.

So, I only have a 30 day trial of auto.

My AHI, according to the machine had been running around 40.

I went ahead and turned on auto last night and my AHI was .3 and I got nearly 8 hours of therapy time. In the middle of the night I was having such a hard time with my nasal congestion that I pulled off the mask and the alarm went off, but then I switched my mask from the nasal mask t the nasal cushion and without the pressure around my nose, the congestion went away after using the mask for a bit.

I do have a belly full of air this morning, but at least I slept.

After the first half of my sleep, it sad the 90% pressure was 16, and when I just now got up, it said the 90% pressure was 15.5...

My throat is pretty sore this morning, I suspect my mouth was open for some of the night. I am going to ask for a hybrid mask to avoid that pressure around my nose but also to cover my mouth. Well see if the equipment company will get me one, small company that didn't have many masks on hand...

When I woke up, my sinuses were more open than ever, with my cpap on... 15 minutes later, totally blocked, worse than normal. Is that usual?

Thanks for the thoughts everyone. If there is anything else I should consider, please let me know. I think the trick now is to explain to the doctor that I went into the secret menu and setup auto on my own and now I want an auto machine

Hi,

It sounds like because you are getting aerophagia, you might want to see if the doctor would consider prescribing an auto bipap particularly since it looks like you need a pressure around 15 or 16. Not sure how that would work procedure wise but worth a shot.

Regarding telling the doctor that you went into the secret menu, not sure exactly what the best thing to say is but phrase it terms of wanting to be as informed as possible in partnering with him to achieve optimal health. And bring data from sleepyhead showing what you have learned.

Hopefully, other members can chime in who will provide more specific advice as to what to say.

49er

I think it's wonderful that you were able to apply the autoset feature and obtain satisfactory results. Good for you! I have had many doctors tell me over the years that they would prefer a patient try something rather than skip using the machine.

Regarding sinus issues, they are unfortunately quite common with pressure therapy equipment. Turning up your humidifier would be a good first step if you could do that and also adding a heated tube depending on what model machine you have. If you can't add a heated tube, you could always insulate the one you have. Another thing clients have reported to me that helps with associated sinus symptoms, was the use of musinex.

Regarding the aerophagia, you might try different sleeping positions. I have had people tell me that they eventually overcame that issue with time.

Good luck, I hope your good progress continues!

To 49'er - sorry about that... it's your name, I always think of some crusty old panhandler guy when I hear it.

I, too, have been down the same road as you. When I complained about having aerophagia, my doc prescribed a BiPap Auto. If the doctor will justify the new machine by "failing" you on CPAP, many insurance companies will cover it. In my case, the BiPap is a dream. I still had mild aerophagia for about 2 months, but it seems to have gone away. Good luck with your journey!

49er wrote:

Julie wrote:Aw Granny - 49'er is so benign compared to others here... don't pick on him (for telling the truth anyhow ).

Thanks Julie. I am a she by the way:)

49er

And a nice she but misunderstood too!

DoriC wrote:

49er wrote:

Julie wrote:Aw Granny - 49'er is so benign compared to others here... don't pick on him (for telling the truth anyhow ).

Thanks Julie. I am a she by the way:)

49er

And a nice she but misunderstood too!

Thanks Dori.

To 49'er - sorry about that... it's your name, I always think of some crusty old panhandler guy when I hear it.

No problem Julie. I have considered changing it for those reasons.