CSA - was prescribed a bipap but it doesn't seem right

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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GearChange
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by GearChange » Wed Dec 07, 2022 7:22 am

Dear friend, your Oscar sleep data is horrible.
First of all you only had the mask on for less than a couple of hours in total. I am assuming that you were up in between and took the mask off.
You need to see your doctor immediately. A BiPAP machine is NOT going to help your clearly SEVERE CSA.
Also "anxiety" itself is a side effect of not sleeping properly, so you were most likely misdiagnosed all those years that they put you on anxiety meds. Good for pharmaceuticals but I am not sure if that was any good for you.
You need to somehow get your hands on an ASV before you start having other complications like cardiovascular problems.
Go see your doctor and tell them you are suffering and to stop di%$cking around with your health.
Not sure how else anyone here can help.
Even though I have had extensive experience with the use and functionality of several types of different PAP machines,no information in my posts should be put in practice unless cleared by your own medical practitioner first.

ImAlwaystired
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Thu Dec 08, 2022 1:02 pm

GearChange wrote:
Wed Dec 07, 2022 7:22 am
Dear friend, your Oscar sleep data is horrible.
First of all you only had the mask on for less than a couple of hours in total. I am assuming that you were up in between and took the mask off.
You need to see your doctor immediately. A BiPAP machine is NOT going to help your clearly SEVERE CSA.
Also "anxiety" itself is a side effect of not sleeping properly, so you were most likely misdiagnosed all those years that they put you on anxiety meds. Good for pharmaceuticals but I am not sure if that was any good for you.
You need to somehow get your hands on an ASV before you start having other complications like cardiovascular problems.
Go see your doctor and tell them you are suffering and to stop di%$cking around with your health.
Not sure how else anyone here can help.
I take it off in my sleep. I have mild CSA which is made much worse by the bipap. My doctor dismisses everything I say.

not looking any better last night
Image

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palerider
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by palerider » Thu Dec 08, 2022 5:02 pm

Yes, a regular bilevel machine will exacerbate CSA, you need an ASV so that it only gives you the high PS when you need it, in order to ventilate you when you don't try to breathe.

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ozij
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ozij » Thu Dec 08, 2022 10:07 pm

ImAlwaystired wrote:
Thu Dec 08, 2022 1:02 pm
My doctor dismisses everything I say.
You need another doctor.

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ImAlwaystired
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Sat Dec 10, 2022 12:00 am

ozij wrote:
Thu Dec 08, 2022 10:07 pm
ImAlwaystired wrote:
Thu Dec 08, 2022 1:02 pm
My doctor dismisses everything I say.
You need another doctor.
well it took 6 months to get into this one, and 9 to the last one, I dont really have choices

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ozij
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ozij » Sat Dec 10, 2022 1:02 am

ImAlwaystired wrote:
Thu Dec 08, 2022 1:02 pm
My doctor dismisses everything I say.
ozij wrote:
Thu Dec 08, 2022 10:07 pm
You need another doctor.
ImAlwaystired wrote:
Sat Dec 10, 2022 12:00 am
well it took 6 months to get into this one, and 9 to the last one, I dont really have choices
That's tough.
Too bad you can neither get your doctor to listen to you, nor find another one who does.

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Miss Emerita
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by Miss Emerita » Sat Dec 10, 2022 12:01 pm

It's good that your doctor has ordered an oximeter to check your O2 levels during sleep. I'm hoping that after you use it for a week, you can get an appointment with the doctor to discuss the results.

It can be really hard to get through to an indifferent doctor. Here are a few ideas.

* Think ahead of time about the information you want the doctor to consider. This could include your condition while you're awake as well as your data and your subjective impressions during the night. If you can print out a typical daily chart from Oscar showing the CAs, plus the Summary showing your CA index over time, that would be valuable.

* When you describe how you feel during the day, be concrete. Give examples of the things you're unable to do and the consequences of this for your life, e.g., concerning work.

* Make a written list ahead of time of the questions you want answers to, e.g., what about the PLM? What is causing the central apnea? Is it time to move to an ASV to treat the central apnea?

* Take someone you trust with you to the appointment. Make sure they know ahead of time what points you want to cover. Ask them to take notes about what the doctor says and to prompt you to present information or ask questions that you may have overlooked. If this is someone who can say first-hand how you're doing during the day or the night, so much the better.

* Speak to the doctor in a calm and respectful way, but be persistent and don't let the doctor ignore the information and questions you're presenting.

I do hope you get that appointment and get something good out of it.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

ImAlwaystired
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Fri Jan 13, 2023 11:04 am

well, he only checked one night, which I hardly slept much, said o2 was fine.
I know it likes to hover around 92%

cutting food earlier helped a little with headaches, I think it was mostly salt related.

but regardless, never really rested

Still getting 40+ahi when I attempt to use it, I've maybe gotten 1-2 hours on bipap of sleep, I notice my mouth always goes open, even with tape

doc's assistant is extremely strange, like uncooperative at every possible level. I sent some oscar reports, 'sorry we need straight data from the machine', but it is..'no, must be from dme'..ok, why not some input on my actual apneas, 'cant do anything until we have data from DME', well they cant seem to figure out how to import it from an email..."you need to fax us every day's report' who even uses fax?

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Miss Emerita
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by Miss Emerita » Fri Jan 13, 2023 11:37 am

This is just awful. Can you simply give the sleep doctor's office your SD card from your machine? Why do they think the DME has a role in getting those data to them?
Oscar software is available at https://www.sleepfiles.com/OSCAR/

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ozij
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ozij » Fri Jan 13, 2023 11:14 pm

ImAlwaystired wrote:
Fri Jan 13, 2023 11:04 am
doc's assistant is extremely strange, like uncooperative at every possible level. I sent some oscar reports, 'sorry we need straight data from the machine', but it is..'no, must be from dme'..ok, why not some input on my actual apneas, 'cant do anything until we have data from DME', well they cant seem to figure out how to import it from an email..."you need to fax us every day's report' who even uses fax?
Which "report from the machine" may that be?
And how do they expect you to get it from the CPAP to the fax?

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And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
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Rubicon
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by Rubicon » Sat Jan 14, 2023 4:17 am

ozij wrote:
Tue Dec 06, 2022 9:07 pm
Those other things, at least according to your titration study are: 1) spontaneous arousals 2) periodic leg movements that surface once you can sleep.
And the PLMs are all in REM.
Freeze this moment a little bit longer.
Make each sensation a little bit stronger.
Experience slips away.

ImAlwaystired
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Thu Jan 26, 2023 3:31 pm

so, I gave up for a while. But then I tried it during the day and got this...

Image


How am I getting central apneas in the day? is this normal? Is it due to the bipap? I tried this yesterday again, and after that I had sharp chest pain, which has lasted till the afternoon today and hasnt gone away

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Pugsy
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by Pugsy » Thu Jan 26, 2023 3:59 pm

If you aren't asleep then those flagged events aren't real asleep apnea events and they don't count except to point to the fact that you weren't asleep.

The machine only measures air flow or breathing. It has no way to know if you are asleep or not.
If you aren't asleep they don't count.

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Miss Emerita
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by Miss Emerita » Thu Jan 26, 2023 4:57 pm

To what Pugsy has written, I would add that it is common for people to pause their breathing for 10 seconds or more while they're awake. It isn't something we really notice much, but it's common during periods when we're concentrating or when we're exerting ourselves, and it can happen in other circumstances too.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

ImAlwaystired
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Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Sat Jan 28, 2023 9:23 pm

The only times I was wearing the mask I have all those apneas. I sent this to my doc and asked him, and I didnt get any response except a 'did you get your 2nd opinion referral request yet?' no, I havent.

during my only brief hour sleeps with the bipap, the chart looks the same. if my o2 isnt dropping, is it even a concern to use a bipap?

Actually, after I recorded that I had an extremely sharp chest pain that lasted for 2 days. I never had that much pain from using it, but I also probably never used it this long