Need Advice - Exhausted Again

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
sean4123
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Need Advice - Exhausted Again

Post by sean4123 » Mon Jan 29, 2024 5:40 pm

Hi all. I have been using my CPAP consistently for about 7 years now and have become dependent on it to where I cannot even fall asleep without it. I am now starting to wake up every 3-4 hours like clockwork and needing to wait about 30 minutes before going back to sleep. I am guessing this is due to the pressure being high and/or i'm not exhaling enough vs. inhale and building up too much breathing in vs. out.

I have been on a medication that I feel may have caused inflammation and swelling everywhere, including my throat and tongue, causing a strange type of sleep apnea, but not sure how one would even explain to diagnose it.

Long story short, has anyone every dealt with this, and not been able to sleep without their machine now? I also bought a new machine and cannot sleep with it even with the same settings as my older one. the flow of the air seems different and I cannot sleep with it, even if i'm dead tired and exhausted I always end up caving and going back to my older machine.

My doc says I have centrals, but only after taking a machine home and having it show them. There were no centrals upon the first sleep study, and I feel they're being caused by too much inhaling and not enough exhaling. A bipap was also recommended, but part of me feels like I am being damaged by this CPAP and i'm starting to lose hope.

I know the common answer is go set another sleep study, but I was curious if any of this has happened to others. I got put on this CPAP at 30, 180 lbs. 6'2 and wasn't a "run-of-the-mill" CPAP diagnosis. Now i'm 225 and constantly on edge and all dreams also are anxiety inducing.

Sorry for the long rant, I'm just wondering if you guys have any outside the box ideas other than just go see the sleep doc again and get the basic replies from him to get on Inspire or try the Central Apnea Machine again (I couldn't tolerate it.)

Thank you for any that reply, I know i'm rambling and likely come off crazy.

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ChicagoGranny
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Re: Need Advice - Exhausted Again

Post by ChicagoGranny » Mon Jan 29, 2024 7:13 pm

sean4123 wrote:
Mon Jan 29, 2024 5:40 pm
I am guessing this is due to the pressure being high and/or i'm not exhaling enough vs. inhale and building up too much breathing in vs. out.
Wild guess without evidence.
sean4123 wrote:
Mon Jan 29, 2024 5:40 pm
I have been on a medication
Which medication and dosing?
sean4123 wrote:
Mon Jan 29, 2024 5:40 pm
I know the common answer is go set another sleep study,
Not in this forum.

Are you using OSCAR or SleepHQ? (Links in my signature) Data is needed to start making sense of what is going on.

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ozij
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Re: Need Advice - Exhausted Again

Post by ozij » Mon Jan 29, 2024 10:10 pm

sean4123 wrote:
Mon Jan 29, 2024 5:40 pm
Hi all. I have been using my CPAP consistently for about 7 years now and have become dependent on it to where I cannot even fall asleep without it.
As far as I know, living human beings are dependent of breathing. They can't live without it.
Long story short, has anyone [...] not been able to sleep without their machine now?
Many of us.
I got put on this CPAP at 30, 180 lbs. 6'2 and wasn't a "run-of-the-mill" CPAP diagnosis.
What was your diagnosis? CPAP is a therapy, not a diagnosis.
Now i'm 225 and constantly on edge and all dreams also are anxiety inducing.
I have been on a medication that I feel may have caused inflammation and swelling everywhere, including my throat and tongue,
I am guessing this is due to the pressure being high and/or i'm not exhaling enough vs. inhale and building up too much breathing in vs. out.
part of me feels like I am being damaged by this CPAP

:? Damaged by the CPAP, and not by the medication that allegedly causes swelling everywhere? Did you ever have that swelling issue checked by your physician?
You are describing what might be a life threatening allergy - though the word "may" - like the word "guess" make me wonder if you're actually being given medication for the anxiety you mentioned.
I'm just wondering if you guys have any outside the box ideas
How about giving us some specific data - see in "Instructions to Newbies before posting" on the top of the forum, and then doing your best to follow them?
Please include:
  • Your original "not run of the mill" diagnosis,
  • the specifics of the old machine and the settings on it.
  • The specifics of you new machine and its exact setting
  • When and how did you ever use a "Central Apnea Machine" which you couldn't tolerate?
  • What is it's name and what were its settings
  • When was it prescribed?
  • What did you tell the doctor that made him give you what you call a "Central Apnea Machine"?

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zonker
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Re: Need Advice - Exhausted Again

Post by zonker » Mon Jan 29, 2024 11:57 pm

pls note the following post made over a bit over a year ago-
viewtopic.php?f=1&t=185710&p=1429792#p1429792

op made no response to the questions they were asked then. perhaps this time, they will?
people say i'm self absorbed.
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sean4123
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Re: Need Advice - Exhausted Again

Post by sean4123 » Tue Jan 30, 2024 5:23 pm

zonker wrote:
Mon Jan 29, 2024 11:57 pm
pls note the following post made over a bit over a year ago-
viewtopic.php?f=1&t=185710&p=1429792#p1429792

op made no response to the questions they were asked then. perhaps this time, they will?
Ended up seeing doctors again and this fell by the wayside, but i've lose faith in doctors so yes I will try to answer the above responses.

sean4123
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Re: Need Advice - Exhausted Again

Post by sean4123 » Tue Jan 30, 2024 5:47 pm

ozij wrote:
Mon Jan 29, 2024 10:10 pm
sean4123 wrote:
Mon Jan 29, 2024 5:40 pm
Hi all. I have been using my CPAP consistently for about 7 years now and have become dependent on it to where I cannot even fall asleep without it.
As far as I know, living human beings are dependent of breathing. They can't live without it.
Long story short, has anyone [...] not been able to sleep without their machine now?
Many of us.
I got put on this CPAP at 30, 180 lbs. 6'2 and wasn't a "run-of-the-mill" CPAP diagnosis.
What was your diagnosis? CPAP is a therapy, not a diagnosis.
Now i'm 225 and constantly on edge and all dreams also are anxiety inducing.
I have been on a medication that I feel may have caused inflammation and swelling everywhere, including my throat and tongue,
I am guessing this is due to the pressure being high and/or i'm not exhaling enough vs. inhale and building up too much breathing in vs. out.
part of me feels like I am being damaged by this CPAP

:? Damaged by the CPAP, and not by the medication that allegedly causes swelling everywhere? Did you ever have that swelling issue checked by your physician?
You are describing what might be a life threatening allergy - though the word "may" - like the word "guess" make me wonder if you're actually being given medication for the anxiety you mentioned.
I'm just wondering if you guys have any outside the box ideas
How about giving us some specific data - see in "Instructions to Newbies before posting" on the top of the forum, and then doing your best to follow them?
Please include:
  • Your original "not run of the mill" diagnosis,
  • the specifics of the old machine and the settings on it.
  • The specifics of you new machine and its exact setting
  • When and how did you ever use a "Central Apnea Machine" which you couldn't tolerate?
  • What is it's name and what were its settings
  • When was it prescribed?
  • What did you tell the doctor that made him give you what you call a "Central Apnea Machine"?

I'm not sure how to reply underneath your comments and not have it just show up as the yellow bordered portions rather than how you formatted it.

Sorry if i'm not 100% accurate in my wording. I was diagnosed with Obstructed Sleep Apnea with an AHI of around an 8. I am still skeptical about a CPAP being the first option considering I was in very good shape and skinny as well as young.

Of course any long term med can be damaging and that most certainly could be the main culprit. I'm on half a mg of Subutex, an opiate type med that helps ease people off of addiction to opiates. Unfortunately it has become much harder to quit than anything i've ever taken. In terms of this being the entire reason for sleep apnea, i've scoured the medication forums for years now and asked doctors, and its simply not a common side effect i've found. Yet to find anyone with my situation.

Original prescribed normal Resmed Escape with pressure of 8.0. I tried to sleep with it and couldn't, sent it back as it was a retnal and immediately was told I have central sleep apneas as well as obstructive. In hindsight that seemed inaccurate as I didn't even sleep with the machine much at all and could have given inaccurate readings just attempting to fall asleep. From what i've seen a machine can claim a huge central apnea AHI even when the patient is still awake and just trying to fall asleep and thats what I think happened. I also feel that the CPAP may be giving me too much air, while not being able to exhale the breaths. Why do I feel this way? I wake up and feel full of air every 3-4 hours of sleep and the only thing that has seemed to help is GasX.

In terms of machine , still using the Escape. Downloaded the software recommended and it is showing the SD card didn't write any info. Old machine and not properly setup maybe? I guess i'll need to try to adjust to a newer machine to get the forum a better idea of what is going on.

Bare with me, this has been a frustrating and exhausting few years, and I realize many will blame me for getting hooked on meds and its my fault i'm in this situation. Very likely, but I just want to get good rest.

P.S. the dependent on breathing reply, of course I understand that. What I mean by being reliant on the CPAP is I cannot fall asleep at all without it. Meaning I can't even go to a sleep study and attempt to fall asleep to allow them to find if I have an AHI higher or lower, etc without the mask and machine. Hope that clears that up.

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Pugsy
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Re: Need Advice - Exhausted Again

Post by Pugsy » Tue Jan 30, 2024 5:58 pm

sean4123 wrote:
Tue Jan 30, 2024 5:47 pm
still using the Escape. Downloaded the software recommended and it is showing the SD card didn't write any info. Old machine and not properly setup maybe? I
The Escape doesn't record any data beyond hours of use. Nothing for the software to see that would offer any details.
Has nothing to do with the age of the machine.

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sean4123
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Re: Need Advice - Exhausted Again

Post by sean4123 » Tue Jan 30, 2024 6:02 pm

Pugsy wrote:
Tue Jan 30, 2024 5:58 pm
sean4123 wrote:
Tue Jan 30, 2024 5:47 pm
still using the Escape. Downloaded the software recommended and it is showing the SD card didn't write any info. Old machine and not properly setup maybe? I
The Escape doesn't record any data beyond hours of use. Nothing for the software to see that would offer any details.
Has nothing to do with the age of the machine.
Ok good to know, so my assumption is accurate that I'll need to move onto a new machine to really get far with this forum, right?

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Pugsy
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Re: Need Advice - Exhausted Again

Post by Pugsy » Tue Jan 30, 2024 6:56 pm

sean4123 wrote:
Tue Jan 30, 2024 6:02 pm
so my assumption is accurate that I'll need to move onto a new machine to really get far with this forum, right?
1....make sure you get a full efficacy data machine

2...and yes...if the forum members stand any chance at all of offering ideas to help you they need something to base those ideas on. We always want to start with the report data. Heck for all we know you still are having a truckload of events or something.

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Miss Emerita
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Re: Need Advice - Exhausted Again

Post by Miss Emerita » Tue Jan 30, 2024 6:59 pm

There's a piece of the timeline I don't understand, and it might be important. What order did these things happen in:

* Your sleep test

* Your use of opiod drugs

* Your treatment with Subutex.

Which was first, which second, and which third?
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zonker
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Re: Need Advice - Exhausted Again

Post by zonker » Tue Jan 30, 2024 7:50 pm

sean4123 wrote:
Tue Jan 30, 2024 5:23 pm
zonker wrote:
Mon Jan 29, 2024 11:57 pm
pls note the following post made over a bit over a year ago-
viewtopic.php?f=1&t=185710&p=1429792#p1429792

op made no response to the questions they were asked then. perhaps this time, they will?
Ended up seeing doctors again and this fell by the wayside, but i've lose faith in doctors so yes I will try to answer the above responses.
thank you. and i see you have a non-data gathering machine. so will leave this here for now and we'll see where we go from here.

good luck!
people say i'm self absorbed.
but that's enough about them.
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ozij
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Re: Need Advice - Exhausted Again

Post by ozij » Tue Jan 30, 2024 9:41 pm

My response is meant for all the kind hearted forum members who want to help the OP.

The following is from one of the OP's threads, in April 2018
My emphasis
Pugsy wrote:
Mon Apr 09, 2018 9:51 pm
You've mentioned a couple of machines...ResMed Escape and ResMed AutoSet ....
I'm using a Resmed AutoSet and Resmed Escape.
which is it?
Pugsy wrote:
Tue Apr 10, 2018 7:28 am

We ask because you seem to want help but if we don't know what you are using we can't offer much in terms of help.

And the ResMed Escape...offers no data at all that might even remotely help you.
2018

It is now the end of January 2024, 6 years later.


sean4123 wrote:
Tue Jan 30, 2024 6:02 pm
Pugsy wrote:
Tue Jan 30, 2024 5:58 pm
sean4123 wrote:
Tue Jan 30, 2024 5:47 pm
still using the Escape. Downloaded the software recommended and it is showing the SD card didn't write any info. Old machine and not properly setup maybe? I
The Escape doesn't record any data beyond hours of use. Nothing for the software to see that would offer any details.
Has nothing to do with the age of the machine.
Ok good to know, so my assumption is accurate that I'll need to move onto a new machine to really get far with this forum, right?
And then there's this, my emphasis:
sean4123 wrote:
Tue Jan 30, 2024 5:47 pm
Original prescribed normal Resmed Escape with pressure of 8.0. I tried to sleep with it and couldn't, sent it back as it was a retnal and immediately was told I have central sleep apneas as well as obstructive [...]

In terms of machine , still using the Escape.
[...]
What I mean by being reliant on the CPAP is I cannot fall asleep at all without it.
I'm out of here.

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sean4123
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Re: Need Advice - Exhausted Again

Post by sean4123 » Wed Jan 31, 2024 3:29 pm

ozij wrote:
Tue Jan 30, 2024 9:41 pm
My response is meant for all the kind hearted forum members who want to help the OP.

The following is from one of the OP's threads, in April 2018
My emphasis
Pugsy wrote:
Mon Apr 09, 2018 9:51 pm
You've mentioned a couple of machines...ResMed Escape and ResMed AutoSet ....
I'm using a Resmed AutoSet and Resmed Escape.
which is it?
Pugsy wrote:
Tue Apr 10, 2018 7:28 am

We ask because you seem to want help but if we don't know what you are using we can't offer much in terms of help.

And the ResMed Escape...offers no data at all that might even remotely help you.
2018

It is now the end of January 2024, 6 years later.


sean4123 wrote:
Tue Jan 30, 2024 6:02 pm
Pugsy wrote:
Tue Jan 30, 2024 5:58 pm
sean4123 wrote:
Tue Jan 30, 2024 5:47 pm
still using the Escape. Downloaded the software recommended and it is showing the SD card didn't write any info. Old machine and not properly setup maybe? I
The Escape doesn't record any data beyond hours of use. Nothing for the software to see that would offer any details.
Has nothing to do with the age of the machine.
Ok good to know, so my assumption is accurate that I'll need to move onto a new machine to really get far with this forum, right?
And then there's this, my emphasis:
sean4123 wrote:
Tue Jan 30, 2024 5:47 pm
Original prescribed normal Resmed Escape with pressure of 8.0. I tried to sleep with it and couldn't, sent it back as it was a retnal and immediately was told I have central sleep apneas as well as obstructive [...]

In terms of machine , still using the Escape.
[...]
What I mean by being reliant on the CPAP is I cannot fall asleep at all without it.
I'm out of here.

I have about 5 different machines. I've used all of them. The one that consistently allows me to sleep, although fragmented sleep, is the escape. I have a BiPap that i've tried to use SEVERAL times. I cannot sleep with it. I have a central affliated sleep machine, I cannot sleep with it. I have 2 different escape machines. Why are some of these replies so rude, such as yours?

No one is forcing you to respond. You're obviously very condescending, and just looking for things to complain or grandstand on. Sorry I don't fit the bill of a consistent sleep apnea board user. I've gone to the sleep doc many times and used many different machines. Glad your therapy works.

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zonker
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Re: Need Advice - Exhausted Again

Post by zonker » Wed Jan 31, 2024 3:33 pm

sean4123 wrote:
Wed Jan 31, 2024 3:29 pm

I have a central affliated sleep machine, I cannot sleep with it.
may i ask the name of this machine? just curious.

and i don't see rudeness from ozij. she is merely becoming frustrated at the multiple vague answers she perceives coming from you.
people say i'm self absorbed.
but that's enough about them.
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sean4123
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Re: Need Advice - Exhausted Again

Post by sean4123 » Wed Jan 31, 2024 3:38 pm

zonker wrote:
Wed Jan 31, 2024 3:33 pm
sean4123 wrote:
Wed Jan 31, 2024 3:29 pm

I have a central affliated sleep machine, I cannot sleep with it.
may i ask the name of this machine? just curious.

and i don't see rudeness from ozij. she is merely becoming frustrated at the multiple vague answers she perceives coming from you.
VPAP Adapt.

When someone acts as if I dont understand that breathing is a core tenant to staying alive, I see that as being rude and condescending. I'm not stupid nor lacking the motivation for help at this point, I just relied on my sleep doc more than I did the board when I came for advice on and off. Also people need to understand that sleep and lack of it can hurt motivation in general.