CPAP DESTROYED MY LIFE

Hi guys,

About a year ago, I tried using an Auto CPAP for one night with the settings at 5 and 7.5, even though I don’t have sleep apnea. I just wanted to try it for a night. Since then, my life has been a living hell. I developed central hypopnea during REM sleep, and I’m basically walking around like a zombie now.

The doctors told me that central events can only occur while using the CPAP, not after, but in my case, it hasn't gone away.

Has anyone experienced something similar, or does anyone have advice or suggestions on how to handle this? Any help or insights would be greatly appreciated.

Thanks in advance!

So....just how do you know that you are having central hyponeas during REM?

I know because I did a polysomnography test.

The results showed that I only have REM events, not non-REM. During the events, my thorax decreases, and there is no snoring.

Was your sleep study done in a lab setting or a home study?

It was done at a sleep lab.

Thank you for taking the time to reply

You need to have a chat with the doctor who ordered/did the sleep study in the lab.

I am sorry but treating anything that is central in nature is quite complicated and requires a very special machine.
If you aren't having enough centrals to earn the official diagnosis you won't get your insurance to pay for the special machine and it is quite expensive and not very easy to go about DIYing the settings.

Thank you.

I don't want to use an ASV. I'm very young, and I hope it should go away.

I didn't have it before I tried the APAP, which was very stupid.

But I could not have imagined that you could get TECSA after stopping its use. It doesn't make sense to get it from just one night of use.

Central wrote: ↑

Sun Jan 12, 2025 5:03 pm

I could not have imagined that you could get TECSA after stopping its use. It doesn't make sense to get it from just one night of use.

I can't imagine it either. It makes zero sense.
What caused you to try the APAP?

I've always had a few events during the 6-7 hour, but nothing in the first 6 hours.

The events after 6 hours would be very few, and I would wake up 1-2 times each night.

So, I took an APAP at a low level, which I thought might reduce the few events I had around the 6-7 hour mark, even though it wasn’t really necessary because they hardly affected me.

The result now is that I have central hypopnea starting from the first REM event after 90 minutes, and it continues to worsen, making life very miserable, unfortunately

I also had an O2 ring that I would just use to monitor my sleep for fun, both before and after using the APAP

https://imgur.com/a/L4mqJ30
https://imgur.com/a/3mxExnl

My breathing is no longer stable after using the APAP, as you can see the difference in the two pictures

Central wrote: ↑

Sun Jan 12, 2025 5:28 pm

My breathing is no longer stable after using the APAP, as you can see the difference in the two pictures

I cannot imagine that one night on apap is the cause of the problem but regardless....there's nothing we can offer that can fix a problem with centrals and if it was the apap then it happened maybe because you had some other sort of respiratory problem to cause this to happen....
all of this means that this forum isn't the place to give you help....you have a problem that needs to be dealt with by the medical professionals.

Best we can do sometimes is just tell you that you need a different machine but you refuse the ASV which is the gold standard for dealing with central apnea.

Good luck to you.

If you're suggesting that using CPAP, for a single night was responsible for you having a permanent case of Central Apnea, than you are either wrong, or are the first documented case ever.

If you have Central, then the solution is an ASV.

There's nothing else to discuss.

I am personally unaware of any scientifically documented instance of the very slight positive pressure(s) of PAP treatment having "destroyed" anyone or anything. One is much more likely to be damaged by a single instance of a sneeze, a cough, or a laugh than by a year of unneeded PAP, in my opinion.

Causes and treatments (when needed) for central sleep apnea vary according to subtype.

Here is a fairly recent authoritative overview from a respected source that does not oversimplify with reductionist rhetoric:

https://sleepeducation.org/sleep-disord ... eep-apnea/

I wish you well as you get answers from your medical team on your specific unique situation.

Central wrote: ↑

Sun Jan 12, 2025 4:11 pm

Hi guys,

About a year ago, I tried using an Auto CPAP for one night with the settings at 5 and 7.5, even though I don’t have sleep apnea. I just wanted to try it for a night. Since then, my life has been a living hell. I developed central hypopnea during REM sleep, and I’m basically walking around like a zombie now.

The doctors told me that central events can only occur while using the CPAP, not after, but in my case, it hasn't gone away.

Has anyone experienced something similar, or does anyone have advice or suggestions on how to handle this? Any help or insights would be greatly appreciated.

Thanks in advance!

I agree with what's being said here.

I'm so very curious though. You used an APAP machine without having sleep apnea, right? And now you say that this caused you to develop sleep apnea. Whose machine was this? Did you just have a APAP machine laying around for you to try out? What settings were used and how were these settings determined?

Central,

Something is just not adding up here.

You claim that you used an APAP for one night at low pressures about a year ago even though you didn't have sleep apnea at the time. And somehow, this one night of using APAP has ruined your (current) life by giving you a permanent case of what you think is treatment emergent central sleep apnea (TECSA).

But it doesn't work that way. TECSA is caused by continued use of PAP therapy in a very small set of people who are put on PAP therapy because they have obstructive sleep apnea (OSA) and cannot just quit using the dang PAP because of their OSA. And in most cases, TECSA goes away on its own as the person's body acclimates to using the PAP machine every night. In other words, it's important to understand that even when a person with OSA is put on PAP and then develops some central apneas while using PAP, the first line of treatment is literally to do nothing and see if the problems with the central apneas resolve over the course of about 3-6 weeks of using the CPAP every night.

The small number of folks with OSA who develop problems with centrals AND who are unlucky enough to not have the number of CAs decrease over time do face a real, significant issue with TECSA. The fix is, in fact, using an ASV that is designed to treat both central sleep apnea and obstructive sleep apnea. But ASV machines are far more expensive and so most insurance companies make such patients jump through multiple hoops before authorizing an ASV machine.

You start by saying:

Central wrote: ↑

Sun Jan 12, 2025 4:11 pm

About a year ago, I tried using an Auto CPAP for one night with the settings at 5 and 7.5, even though I don’t have sleep apnea. I just wanted to try it for a night

If you didn't have sleep apnea, why on earth did you try it?

Central wrote: ↑

Sun Jan 12, 2025 4:11 pm

The doctors told me that central events can only occur while using the CPAP, not after, but in my case, it hasn't gone away.

1) Sleep doctors actually are aware of the fact that a small number of people have central sleep apnea that is unrelated to CPAP usage. In other words, they may present with the same symptoms as a person with run-of-the-mill OSA (excessive daytime fatigue), but when the initial sleep study is done without a CPAP being used, a person with CSA winds up having lots of CAs and very few (if any) OAs.

2) If your centrals "didn't go away" after you have not used a PAP machine in a whole year, then whatever CAs you are actually having are NOT caused by PAP therapy. If they exist, they're caused by you having a real problem with central sleep apnea that may or may not have existed even before you used that APAP for one night a whole year ago.


In response to Pugsy asking you, "So....just how do you know that you are having central hyponeas during REM?" you write:

Central wrote: ↑

Sun Jan 12, 2025 4:24 pm

I know because I did a polysomnography test.

The results showed that I only have REM events, not non-REM. During the events, my thorax decreases, and there is no snoring.

Questions:
1) When did you have that polysomnography test done? A year ago, before you ever tried the APAP for one night? Or in the last few weeks? Have you had more than one polysomnogram? In other words, have you had a baseline without any PAP being used as well as a titration study where they have you use a PAP machine?

2) Have you seen the full copy of the test results, including the summary graphs for every polysomnography test you've had? If so, post them here and we'll be able to give you some insight into what's going on. If you haven't the full copy of your test results, you need to contact the sleep doc's office (or the sleep clinic) and tell them you want the full report with the summary graphs. They're your medical records and you are entitled to have a copy.

3) "During the events, my thorax decreases, and there is no snoring" does not make sense. The throrax is the whole area of your body between the neck and abdomen. In some sense, your "thorax" changes size with each and every normal breath you take: When you breath in, your chest (and hence your thorax) expands; when you breath out, your chest (and hence your throrax) contracts.

Now when an obstructive apnea happens when you are asleep, the chest continues to move in and out because your brain continues to send the message, "inhale now" to the diaphragm. But because the upper airway in your throat and neck has collapsed, no air can get into the lungs. The obvious effort to breath is there and visible in the data available to the person scoring the polysomnograph. And snoring? It may or may not be present before the obstructive apnea occurs. (Worth noting: Snoring is caused by tissues in and around your upper airway vibrating due to the restricted air movement in an airway that is unstable and may be at risk of collapsing. But not everyone with OSA snores and not everyone who snores has OSA.

When a central apnea happens when you are asleep, the brain literally misinterprets the CO2-level in the blood and it forgets to send the "inhale now" signal to the diaphragm. Frequently this is part of a CO2-overshoot/undershoot cycle where first the body blows off too much CO2, which reduces the urge to breath. Then the CO2 builds up and the brain (in a panic) sends some frantic "INHALE LOTS OF AIR NOW" messages to the diaphragm and the result is that you wind up hyperventilating for a long enough time to once again blow off too much CO2. The data the sleep tech sees for CAs versus OAs is quite different. In a CA, the breathing becomes shallower and shallower with out any obvious attempts to inhale more deeply, until the breathing simply pauses. And then the breathing picks up again as the diaphragm receives the "inhale now" messages.


You go on to post this:

Central wrote: ↑

Sun Jan 12, 2025 5:03 pm

I don't want to use an ASV. I'm very young, and I hope it should go away.

I didn't have it before I tried the APAP, which was very stupid.

But I could not have imagined that you could get TECSA after stopping its use. It doesn't make sense to get it from just one night of use.

1) Did you have a sleep test done before you ever tried the APAP? If you did and if it showed that you had no significant problem with sleep apnea, then why did you use the APAP in the first place?

2) If you have recently had a polysomnogram and it showed a real problem with central sleep apena, then you need to accept the diagnosis and you need to quit blaming the one night using APAP a year or so ago. If you have central sleep apnea, then there is something in your body's make up that is making it have a hard time regulating the level of CO2 in your blood when you are asleep. If that's the case, then you have a choice: You can choose to not treat the central apnea and continue to feel lousy. Or you can accept the idea that you need a sleep doc who is willing to look at the results of your sleep test, explain them carefully to you, and if an ASV is prescribed, you can figure out a way to get used to sleeping with the machine that you need to help your body do a better job of regulating the CO2 levels in your blood while you sleep.

Central wrote: ↑

Sun Jan 12, 2025 5:26 pm

I've always had a few events during the 6-7 hour, but nothing in the first 6 hours.

The events after 6 hours would be very few, and I would wake up 1-2 times each night.

This statement is based on what data? Did you have a sleep test done before you used the APAP? Did it show that you had such a low number of events that you were NOT diagnosed with sleep apnea?

Here's the thing: Even people with normal sleep have a few apneas and hypopneas now and then, but they feel fine because the number and length of them is just not significant. And even people with normal sleep have a few wakes during the night---it's actually quite common for people to wake up after every REM cycle. It's just that when a person is not obsessing about the quality of their sleep, the most common reaction to those wakes is to roll over and go right back to sleep. It's only when we start worrying about those wakes that they become problematic: Lying in bed for 20-30 minutes worrying about the fact that you are awake is detrimental to the quality of your sleep; waking up, realizing there's nothing wrong, and turning over and going back to sleep in 5 minutes does not usually adversely affect the quality of your sleep if it's only happening 1-2 times a night.

So, I took an APAP at a low level, which I thought might reduce the few events I had around the 6-7 hour mark, even though it wasn’t really necessary because they hardly affected me.

Again: Why did you try APAP if you already knew that you had so few events that they were not an issue with your sleep? This makes no sense to me.

The result now is that I have central hypopnea starting from the first REM event after 90 minutes

And this statement is based on what data? How do you know you have a central hypopnea at the start of your first REM cycle every single night if you're not using a PAP machine that tracks events? How do you know this ever happened on a consistent basis?

Again: If you've had a recent sleep study that shows you have some centrals occurring during REM cycles, you need to talk to a sleep doctor about the full results of your sleep test and you need to fully listen to what the doctor recommends in terms of treatment. If you only have a few CAs now and then during REM cycles, you probably don't actually have central sleep apnea of any kind, and you need to investigate other reasons for your daytime fatigue and your subjectively poor quality of sleep. If you do have enough CAs to warrant a diagnosis of central sleep apnea, you need to listen to the sleep doctor's suggestions about whether to use and ASV at night and what kind of hoops your insurance company might make you jump through before they're willing to pay for an ASV.