First Night CPAP- Suffocating- Help!

Midwest_non_sleeper · Post by **Midwest_non_sleeper** » Tue May 21, 2019 6:25 pm

Peony wrote: ↑
Tue May 21, 2019 5:32 pm

zonker wrote: ↑
Tue May 21, 2019 4:41 pm

Peony wrote: ↑
Tue May 21, 2019 3:11 pm

Hi
That doesnt work for me. Not sure if its because I dont own it, and the insurance company monitors it?? But I did see the tech change the pressures yesterday when I picked it up (unfortunately wasnt paying close attention to what she was doing).
Pushing the house and the big knob at the same time does nothing. ugh!
oh, dear. i am SO sorry. i've left out an important bit, which jas_williams has been good enough to point out. you must press the house button and the big knob together and hold them both down for at least ten seconds before the change happens.

this is NOT your fault, it's MY fault. and again i'm sorry for neglecting to put a step in.

please try again and let us know what the results are. between all of us here, i'm sure we can get you into the menu to change your minimum pressure.
Yeah! Got it! It worked- you guys are so smart! Just hope insurance co (Carecentrix) or my doctor dont scold me!

When I first changed mine, my doctor's office called me (not my actual doctor, just his lackeys) and said that I wasn't "allowed" to change the pressure and that the doctor would be mad. These were my exact words, verbatim, to her:

"Well, it's like this you see. Having the pressure set to 4cmH20 is entirely too low and I feel like I can't breathe. Since I feel like I can't breathe, I don't want to actually use it. So I changed it. I understand that it is now "outside" of the doctor's prescription. So here are my choices: Either keep it the way it is and not use it, or change it and use it every night. If the doctor is not comfortable writing me a new prescription that reflects a higher minimum pressure, then I will fire him and certainly go find a doctor that is."

I haven't heard from them since, but I did meet with the doctor himself. We had a nice long discussion about the therapy and just how much I knew about it. He was impressed that I was on top of it and said that he didn't care that I changed my pressure, just as long as it was benefiting me. It is incumbent upon you to take charge of your therapy (as long as you do some research and get to know what's going on). Your doctor doesn't know how you feel from day to day on what pressures, YOU do.

zonker · Post by **zonker** » Tue May 21, 2019 6:27 pm

Peony wrote: ↑
Tue May 21, 2019 5:32 pm

Yeah! Got it! It worked- you guys are so smart! Just hope insurance co (Carecentrix) or my doctor dont scold me!

YAY!!! now, please come back in tomorrow, in this thread, and tell us if this change made any difference.

did you set the min pressure to 7?

and, you know, it's not that we are smart. we just remember stuff that others have told us.

zonker · Post by **zonker** » Tue May 21, 2019 6:30 pm

btw, i just captured this in another thread here this morning and can't wait to share-

dojiscalper wrote: ↑
Tue May 21, 2019 6:03 am

Your support network of doctors don't realize that this isn't like a prescription for a pill. It's like a prescription for an exercise program. It will take time and even a lot of time to get used to it and get the settings and gear right. Once you get it all working and comfortable you'll never want to sleep without it.

It took me nearly a year but I'm very sensitive to anything bugging me.

and i can't add anything to THAT!

palerider · Post by **palerider** » Tue May 21, 2019 7:27 pm

Midwest_non_sleeper wrote: ↑
Tue May 21, 2019 6:25 pm
When I first changed mine, my doctor's office called me (not my actual doctor, just his lackeys) and said that I wasn't "allowed" to change the pressure and that the doctor would be mad. These were my exact words, verbatim, to her:

"Well, it's like this you see. Having the pressure set to 4cmH20 is entirely too low and I feel like I can't breathe. Since I feel like I can't breathe, I don't want to actually use it. So I changed it. I understand that it is now "outside" of the doctor's prescription. So here are my choices: Either keep it the way it is and not use it, or change it and use it every night. If the doctor is not comfortable writing me a new prescription that reflects a higher minimum pressure, then I will fire him and certainly go find a doctor that is."

I haven't heard from them since, but I did meet with the doctor himself. We had a nice long discussion about the therapy and just how much I knew about it. He was impressed that I was on top of it and said that he didn't care that I changed my pressure, just as long as it was benefiting me. It is incumbent upon you to take charge of your therapy (as long as you do some research and get to know what's going on). Your doctor doesn't know how you feel from day to day on what pressures, YOU do.

Every new cpap user that gets any guff from their doctors should take that as a guide, if not an exact script to use to resolve the issue.

Outstanding sir... outstanding.

zoocrewphoto · Post by **zoocrewphoto** » Tue May 21, 2019 7:35 pm

palerider wrote: ↑
Tue May 21, 2019 5:39 pm

Peony wrote: ↑
Tue May 21, 2019 5:32 pm
Just hope insurance co (Carecentrix) or my doctor dont scold me!
Insurance companies don't care about anything other than whether you're using the machine or not... so, if you adjust the pressures to make it more tolerable and have it work better... that should mean you'll use it more, and they'll be happy.

Doctors with god complexes may get their panties in a wad and scold you... at which point they need to be reminded that they work for YOU!

Good doctors will be tickled pink that you're taking a strong interest in optimizing your treatment.

Very true. My DME was shock and probablya bit irritated that on the first day, I went in and changed the time setting. I am a night owl and sleep past noon. I did not like my sleep sessions split up.

My actual sleep doctor was awesome. He was impressed when I came in for my first followup and had a printed summary of my success. He was happy to hear about this forum, and asked for the sheet I had.

A few weeks later, I returned with my mom. She had been using cpap for almost 20 years, but didn't feel the improvements that I had gotten in less than 6 weeks. Her older machine did not have full data. I let her use my machine for two partial nights. I changed the settings to her prescription of 10 the first night. I uploaded and printed the graphs before changing it back to my settings and going to bed. Her ahi was 3.4 with clusters of events over 30 seconds. One was 62 seconds. A few nights later, she did a partial night with it set for 10-13to see what it wanted to do. We took her old sleep study and those two print outs. The doctor shook my hand, reviewed the reports, and prescribed a new machine set for 10-15. She is doing MUCH better now. Not only did a change the settings, but gasp, I let somebdoy ELSE use it!

palerider · Post by **palerider** » Tue May 21, 2019 8:06 pm

zoocrewphoto wrote: ↑
Tue May 21, 2019 7:35 pm

palerider wrote: ↑
Tue May 21, 2019 5:39 pm

Peony wrote: ↑
Tue May 21, 2019 5:32 pm
Just hope insurance co (Carecentrix) or my doctor dont scold me!
Insurance companies don't care about anything other than whether you're using the machine or not... so, if you adjust the pressures to make it more tolerable and have it work better... that should mean you'll use it more, and they'll be happy.

Doctors with god complexes may get their panties in a wad and scold you... at which point they need to be reminded that they work for YOU!

Good doctors will be tickled pink that you're taking a strong interest in optimizing your treatment.
Very true. My DME was shock and probablya bit irritated that on the first day, I went in and changed the time setting. I am a night owl and sleep past noon. I did not like my sleep sessions split up.

My actual sleep doctor was awesome. He was impressed when I came in for my first followup and had a printed summary of my success. He was happy to hear about this forum, and asked for the sheet I had.

A few weeks later, I returned with my mom. She had been using cpap for almost 20 years, but didn't feel the improvements that I had gotten in less than 6 weeks. Her older machine did not have full data. I let her use my machine for two partial nights. I changed the settings to her prescription of 10 the first night. I uploaded and printed the graphs before changing it back to my settings and going to bed. Her ahi was 3.4 with clusters of events over 30 seconds. One was 62 seconds. A few nights later, she did a partial night with it set for 10-13to see what it wanted to do. We took her old sleep study and those two print outs. The doctor shook my hand, reviewed the reports, and prescribed a new machine set for 10-15. She is doing MUCH better now. Not only did a change the settings, but gasp, I let somebdoy ELSE use it!

Your doc sounds like a keeper.

zoocrewphoto · Post by **zoocrewphoto** » Tue May 21, 2019 9:56 pm

palerider wrote: ↑
Tue May 21, 2019 8:06 pm
Your doc sounds like a keeper.

I recommend him when I can. We are both doing great, so we don't need to go back unless something changes. I am very grateful to have such a good start, both with the lab and the doctor.

Peony · Post by **Peony** » Wed May 22, 2019 10:40 am

Midwest_non_sleeper wrote: ↑
Tue May 21, 2019 6:25 pm

Peony wrote: ↑
Tue May 21, 2019 5:32 pm

zonker wrote: ↑
Tue May 21, 2019 4:41 pm

Peony wrote: ↑
Tue May 21, 2019 3:11 pm

Hi
That doesnt work for me. Not sure if its because I dont own it, and the insurance company monitors it?? But I did see the tech change the pressures yesterday when I picked it up (unfortunately wasnt paying close attention to what she was doing).
Pushing the house and the big knob at the same time does nothing. ugh!
oh, dear. i am SO sorry. i've left out an important bit, which jas_williams has been good enough to point out. you must press the house button and the big knob together and hold them both down for at least ten seconds before the change happens.

this is NOT your fault, it's MY fault. and again i'm sorry for neglecting to put a step in.

please try again and let us know what the results are. between all of us here, i'm sure we can get you into the menu to change your minimum pressure.
Yeah! Got it! It worked- you guys are so smart! Just hope insurance co (Carecentrix) or my doctor dont scold me!
When I first changed mine, my doctor's office called me (not my actual doctor, just his lackeys) and said that I wasn't "allowed" to change the pressure and that the doctor would be mad. These were my exact words, verbatim, to her:

"Well, it's like this you see. Having the pressure set to 4cmH20 is entirely too low and I feel like I can't breathe. Since I feel like I can't breathe, I don't want to actually use it. So I changed it. I understand that it is now "outside" of the doctor's prescription. So here are my choices: Either keep it the way it is and not use it, or change it and use it every night. If the doctor is not comfortable writing me a new prescription that reflects a higher minimum pressure, then I will fire him and certainly go find a doctor that is."

I haven't heard from them since, but I did meet with the doctor himself. We had a nice long discussion about the therapy and just how much I knew about it. He was impressed that I was on top of it and said that he didn't care that I changed my pressure, just as long as it was benefiting me. It is incumbent upon you to take charge of your therapy (as long as you do some research and get to know what's going on). Your doctor doesn't know how you feel from day to day on what pressures, YOU do.

Very good points you make! Thanks

Peony · Post by **Peony** » Wed May 22, 2019 10:50 am

zonker wrote: ↑
Tue May 21, 2019 6:27 pm

Peony wrote: ↑
Tue May 21, 2019 5:32 pm

Yeah! Got it! It worked- you guys are so smart! Just hope insurance co (Carecentrix) or my doctor dont scold me!
YAY!!! now, please come back in tomorrow, in this thread, and tell us if this change made any difference.

did you set the min pressure to 7?

and, you know, it's not that we are smart. we just remember stuff that others have told us.

Hello
After increasing the pressure form 4 to 6 yesterday, I did not have that suffocating feeling last night- yeah! BUT I kept getting air pushing out of my mouth which constantly woke me up, so unfortunately I only made 3 hours last night with CPAP- and my insurance wants a minimum of 4 hours

I tried taping my mouth but the air just filled up my cheeks. I have a chin strap but its like a torture device and I just cant do it. I did order a soft collar on Amazon yesterday though, but not sure that will be comfortable with my pillow.
Argh- this whole thing is so hard!
Thanks again, all, for your help and feedback! BTW- I feel better today than yesterday (not as horribly exhausted), but, again, I only lasted 3 hours with CPAP last night before I couldnt take it anymore due to the frequent wake ups from air blasts out my mouth.

zonker · Post by **zonker** » Wed May 22, 2019 10:55 am

Peony wrote: ↑
Wed May 22, 2019 10:50 am

Hello
After increasing the pressure form 4 to 6 yesterday, I did not have that suffocating feeling last night- yeah! BUT I kept getting air pushing out of my mouth which constantly woke me up, so unfortunately I only made 3 hours last night with CPAP- and my insurance wants a minimum of 4 hours I tried taping my mouth but the air just filled up my cheeks. I have a chin strap but its like a torture device and I just cant do it. I did order a soft collar on Amazon yesterday though, but not sure that will be comfortable with my pillow.
Argh- this whole thing is so hard!
Thanks again, all, for your help and feedback!

it IS hard, that's for sure. there is a very long period of adjustment. but you'll make it.

that puffy cheek thing is common. i wish i had an answer for that. but someone will come along shortly to tell you and then we'll both know!

meanwhile, keep at it. i can promise you it does get easier. wish i could tell you an exact time frame, but we are all different in how we adjust to this thing.

good luck!

kteague · Post by **kteague** » Wed May 22, 2019 12:39 pm

For success in placing your tongue on the roof of your mouth to block leaks, the tip of your tongue should be forward just behind your front teeth with the tongue flattened and fully filling the roof with a suction seal. Is this the method you used? It can take some practice over time to get it to be second nature and not keep coming unsealed. I keep my tongue in that position all the time now. One thing I hadn't considered when being a rabid advocate of tongue sealing is anatomy. My own small mouth and somewhat thick tongue might make it easier for me than those who have a high arched palate. Good luck with things.

Peony · Post by **Peony** » Wed May 22, 2019 5:03 pm

kteague wrote: ↑
Wed May 22, 2019 12:39 pm
For success in placing your tongue on the roof of your mouth to block leaks, the tip of your tongue should be forward just behind your front teeth with the tongue flattened and fully filling the roof with a suction seal. Is this the method you used? It can take some practice over time to get it to be second nature and not keep coming unsealed. I keep my tongue in that position all the time now. One thing I hadn't considered when being a rabid advocate of tongue sealing is anatomy. My own small mouth and somewhat thick tongue might make it easier for me than those who have a high arched palate. Good luck with things.

Yes, I do exactly that. But, I believe as I drift into sleep, the tongue relaxes and is no longer glued to the roof of my mouth. Im sure its natural.

Peony · Post by **Peony** » Wed May 22, 2019 5:08 pm

zonker wrote: ↑
Wed May 22, 2019 10:55 am

Peony wrote: ↑
Wed May 22, 2019 10:50 am

Hello
After increasing the pressure form 4 to 6 yesterday, I did not have that suffocating feeling last night- yeah! BUT I kept getting air pushing out of my mouth which constantly woke me up, so unfortunately I only made 3 hours last night with CPAP- and my insurance wants a minimum of 4 hours I tried taping my mouth but the air just filled up my cheeks. I have a chin strap but its like a torture device and I just cant do it. I did order a soft collar on Amazon yesterday though, but not sure that will be comfortable with my pillow.
Argh- this whole thing is so hard!
Thanks again, all, for your help and feedback!
it IS hard, that's for sure. there is a very long period of adjustment. but you'll make it.

that puffy cheek thing is common. i wish i had an answer for that. but someone will come along shortly to tell you and then we'll both know!

meanwhile, keep at it. i can promise you it does get easier. wish i could tell you an exact time frame, but we are all different in how we adjust to this thing.

good luck!

Thank you!!

Julie · Post by **Julie** » Wed May 22, 2019 5:23 pm

Do a forum search on 'chipmunk cheeks' - it's a real thing many get... and you'll find lots of info.

Peony · Post by **Peony** » Thu May 23, 2019 2:09 pm

Julie wrote: ↑
Wed May 22, 2019 5:23 pm
Do a forum search on 'chipmunk cheeks' - it's a real thing many get... and you'll find lots of info.

Thanks!

First Night CPAP- Suffocating- Help!

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