New to CPAP but feeling much worse instead of better

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Miss Emerita
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Re: New to CPAP but feeling much worse instead of better

Post by Miss Emerita » Mon Jun 17, 2024 11:25 am

Have you tried using the machine during the day or evening yet? If not, please do and tell us how it goes.

Please also either get an SD card for your machine or set up a free account with Sleep HQ. These are steps you need to take for us to be able to help you.

It sounds to me as though you're experiencing intense anxiety. It's possible you're hyperventilating without knowing it; that would explain your feelings of shortness of breath. Here are some practical steps you can take to see whether they help: https://myhealth.alberta.ca/Health/afte ... wid=ut2508
Oscar software is available at https://www.sleepfiles.com/OSCAR/

Tanuki
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Re: New to CPAP but feeling much worse instead of better

Post by Tanuki » Mon Jun 17, 2024 11:56 am

Miss Emerita wrote:
Mon Jun 17, 2024 11:25 am
Have you tried using the machine during the day or evening yet? If not, please do and tell us how it goes.

Please also either get an SD card for your machine or set up a free account with Sleep HQ. These are steps you need to take for us to be able to help you.

It sounds to me as though you're experiencing intense anxiety. It's possible you're hyperventilating without knowing it; that would explain your feelings of shortness of breath. Here are some practical steps you can take to see whether they help: https://myhealth.alberta.ca/Health/afte ... wid=ut2508
Yes, I’ve used it a bit during the day, but not for as long as I’ve used it at night. Kinda hard to, since I’m basically completely immobilized while using it. But like I said, I’m afraid to use it at all now due to the issues I’m experiencing after using it.

And no, I’m not hyperventilating, and it’s not anxiety. I know anxiety very well, and this is something different. And it only happens after I use the PAP machine for awhile.

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Miss Emerita
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Re: New to CPAP but feeling much worse instead of better

Post by Miss Emerita » Mon Jun 17, 2024 7:00 pm

OK, then this is probably the point at which you should consult your doctor.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

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ChicagoGranny
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Re: New to CPAP but feeling much worse instead of better

Post by ChicagoGranny » Tue Jun 18, 2024 6:07 am

Tanuki wrote:
Sat Jun 15, 2024 5:29 pm
Is my feeling of being tense and short on breath during the day also being caused by the PAP machine in some way?
CPAP is not known to cause this situation.
"It's not the number of breaths we take, it's the number of moments that take our breath away."

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robysue1
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Re: New to CPAP but feeling much worse instead of better

Post by robysue1 » Tue Jun 18, 2024 8:10 am

Tanuki,

First, I'm genuinely sorry that you are having a tough time---I am someone who had a far worse than normal adjustment to CPAP therapy, but once it finally started doing me some good, I was glad that I persevered through the really tough first several months.

Yes, some people struggle with learning how to sleep in with the mask on their face and the sensation of air being blown at them all night. The fact that you are reporting feeling super hot at night and that you are using the auto setting for the humidifier makes me wonder: Are you using a heated hose? If so, you ought to turn the hose OFF. And since excess humidity can increase discomfort when you're already too warm, you might very well want to turn humidifier down to a lower setting.

Next, as others have suggested, get an SD card for your machine so that you can download your data yourself into OSCAR or upload it over at SleepHQ. The data available on the machine's LCD and at MyAir is better than nothing, but is still limited. At the start, the data is not likely to make much sense to you, but showing us the daily data will help us make better suggestions on what to try for addressing your particular problems.

In your initial post you write:
Another weird and concerning thing about the past two nights is that, according to my PAP machine, I’ve had more central AI than obstructive AI (3.2:2.5 the first night and 8.7:1.3 the second), despite the fact that my sleep test results had 0 for central apnea. I don’t know what to make of that, but I doubt it’s anything good
Most likely those flagged CA are "false positives" that got scored when you were tossing and turning and not sleeping or at least not sleeping soundly. I say this because you self-report that you did not sleep very well on either of those nights.

In your most recent post you write:
So I tried skipping a day of using the PAP at night and I still woke up feeling hot that night, but I didn’t feel short of breath the next day as I did the previous two days after having used the PAP. I did still feel really tense but not as much as the previous two days. So after that, I tried to use the PAP again last night, but after a few hours of being unable to go to sleep I took it off, but I still couldn’t fall asleep and ended up not sleeping at all overnight for the first time in my life.
As counterintuitive as it sounds, skipping the night with CPAP made it harder to use it the next night. Essentially you rewarded that part of your anxious brain that does not want to accept the reality of needing to learn how to sleep with a strange mask attached to a 6-foot hose on your face.

Now please understand: I am someone who found it very difficult to teach my body how to sleep with this contraption on my face and my pre-CPAP intermittent insomnia became much worse after starting CPAP. I was also dealing with severe aerophagia problems---i.e. the CPAP was causing me to swallow air at night, and the bloating was incredibly painful.


You write:
The shortness of breath feeling came back strong as soon as I stopped using the PAP last night and still persists now, and I’m extremely tense and unable to relax, my heartbeat feeling very prominent. I’m not sure my waking up feeling hot issues are being caused by the PAP, but this shortness of breath thing absolutely is, and it’s making it much harder for me to relax or sleep, and I don’t know what to do now…
I suspect the shortness of breath is caused by anxiety. As is the inability to relax.

As for what to do about it: Yes, you should let the doctor who prescribed the CPAP know you are having anxiety symptoms---tell them about the shortness of breath and when it occurs as well as your level of tenseness and inability to relax---and tell them that it gets worse after you attempt to use the CPAP. There are two basic ways to deal with serious anxiety issues: (1) Cognitive behavior methods where you learn ways to respond to the anxiety in ways that help defuse it and (2) anti-anxiety medication. Both approaches can be combined, and the "best" approach to start with is the one you feel most comfortable doing.

There is also this to keep in mind as well: With the CPAP, your diaphragm and chest muscles that are involved in breathing do have to work a bit harder to exhale against the positive pressure. And for some people it takes the body a while to get used to that.
I can’t just keep doing trial and error every night while I get progressively worse and worse.
Unfortunately trial and error is the only way to troubleshoot the problems that each individual has when starting therapy. What works for one person may actually make the problems worse for another person.

As for the getting progressively worse and worse: Again, I know exactly what you mean by that having experienced a severe crash-and-burn after starting CPAP. But then I was largely non-symptomatic before starting CPAP---as in I didn't have any problems with daytime fatigue or excess sleepiness before starting CPAP, but they both exploded after I started CPAP. Now I'm not telling you this to scare you: I'm telling you this in order to be honest with you. Things will (eventually) improve if you make the decision that you are going to make this crazy therapy work for you.

For most people, it takes anywhere from a couple of weeks to maybe a month before they are sleeping soundly with the machine AND their body gets over a so-called "sleep debt". What I mean by that is this:

It takes time to teach your body how to sleep with the hose attached to your face. It's not just the obvious things of how to move around in bed and how to fix the inevitable leaks. It's also things like sorting out how much humidity your particular nose wants and what the best hose temperature is for you to use. Since you're experiencing problems with feeling hot and stuffy while attempting to sleep with the mask, that probably indicates you need to turn the hose temp down (or off) and decrease the humidifier. But you are the only one who can experiment with those settings to see what happens to your particular body. (In my case I felt excessively cold from the exhaust venting blowing on my arms all night, my nose felt dry and my upper lips were getting severely chapped at the beginning. I didn't have a heated hose, but I was able to crank the humidifier setting up to its max and I had to find other ways to protect my upper arms from the blast of arctic air. We're all different.)

And keep this in mind: For many people, once their body is sleeping without the constant interruptions from the apneas and hypopneas, the body starts craving sleep. And as part of that craving sleep, they sometimes experience daytime sleepiness.

For many people, getting through those first two weeks is really, really hard. When a new CPAPer is having trouble getting to sleep or staying asleep while using the CPAP machine, sleep doctors will sometimes suggest using a prescription sleeping pill for a couple of weeks. In retrospect, one of my biggest mistakes when I was first starting out was my resistance to using a sleeping pill when it was first suggested to me. I probably could have saved myself a couple of
Every night that I’ve used the PAP has been so much worse for me than normal.
This is NOT uncommon during the first couple of weeks to first month or so of using a CPAP.
But I have to keep using it for insurance to cover it… I’m afraid to even keep trying to use it during the day now, too, though, because it’s just going to make me feel short of breath again which will mess with my sleep even more. Is this something anyone here has experienced before with their PAP machine, and if so how did you resolve it??
The advice to use the machine in the daytime really helps some people. It can help some people acclimate to the feeling of the mask on their face and it can help some people teach their body how to breathe with the machine instead of fighting the machine. This is particularly true if you are using EPR. (And some people do report that using EPR makes them feel like the machine is "rushing" their breathing, which can lead to a feeling of being short of breath.)

And certainly using the machine during the daytime builds "compliance" hours so the insurance company will continue to pay for it.

But you're still going to need to make an effort to use the machine at night in order to teach your body how to sleep with it. One piece of advice that I would give you is to establish a relaxing bedtime ritual that does NOT involve setting up the CPAP equipment. Get the CPAP equipment all set up well before bedtime so that when you do go to bed after your relaxing bedtime ritual, all you have to do is put the mask on and turn the machine on.

I’m absolutely desperate for any kind of relief from this… I’m trying to get in to see my doctor and also talk to the sleep therapy place as well but it’s such a slow, frustrating process so I don’t know how soon I’ll actually be able to get any answers that way, if at all.
By "sleep therapy place" do you mean the place that did the sleep test? Or do you mean the DME who sold you the machine?

Does your doctor have a patient portal? I have found that reaching out to doctors through the patient portal often works much better than playing phone tag with the doctor's office. Regardless of whether you are leaving phone messages or writing a message on the patient portal, it helps to draft what you want to say beforehand: Prioritize your list of problems and focus on the one or two that seem most critical to solve at first. Then clearly explain exactly what symptoms/complaints you have as precisely as you can.

As an example: "I can't sleep and my breathing is funny" is not very helpful.

"I tossed and turned all night because I was so hot even though I have the AC set to ** degrees and 3 fans in the room. I don't think I got much sleep at all and I feel really bad this morning. My breathing this morning feels like I'm short of breath and I can't seem to relax at all this morning." is a lot more helpful and will be more likely to get an answer from the doctor that has some specific ideas to try rather than a curt "Just keep trying."

Good luck on this new adventure. And keep in mind that it's a process that takes a while.
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Re: New to CPAP but feeling much worse instead of better

Post by robysue1 » Tue Jun 18, 2024 8:20 am

Tanuki wrote:
Mon Jun 17, 2024 11:56 am
Miss Emerita wrote:
Mon Jun 17, 2024 11:25 am
Have you tried using the machine during the day or evening yet? If not, please do and tell us how it goes.

Please also either get an SD card for your machine or set up a free account with Sleep HQ. These are steps you need to take for us to be able to help you.

It sounds to me as though you're experiencing intense anxiety. It's possible you're hyperventilating without knowing it; that would explain your feelings of shortness of breath. Here are some practical steps you can take to see whether they help: https://myhealth.alberta.ca/Health/afte ... wid=ut2508
Yes, I’ve used it a bit during the day, but not for as long as I’ve used it at night. Kinda hard to, since I’m basically completely immobilized while using it. But like I said, I’m afraid to use it at all now due to the issues I’m experiencing after using it.
You're feeling tethered by the machine. That's not an uncommon feeling.

When you are using it in the daytime, you should do the following: Move the machine out of the bedroom to a comfortable chair/sofa and plan on doing some reading while using the machine. Or web browsing on a cell phone or laptop. Or watch tv while using the machine. Or do crosswords while using the machine. In other words, use the machine at a time when you would be sitting down quietly for some activity anyway. Do something you like doing and something that won't make you think, "I'm tied to this stupid machine when I need to be up and about doing the laundry or washing the dishes or out gardening or ..."
And no, I’m not hyperventilating, and it’s not anxiety. I know anxiety very well, and this is something different. And it only happens after I use the PAP machine for awhile.
I'm inclined to agree with Miss Emerita: I think the CPAP is triggering some anxiety issues that occur only when you use the CPAP.

The other possibility is that your muscles and diaphragm have to work harder to exhale when using the machine. And when you take the mask off, your muscles and diaphragm continue to work harder than they should on exhalation which would trigger a bit of hyperventilation---i.e. blowing off too much CO2 because of the "abnormally forceful" exhalations. The difference in the exhalations might be so subtle that you don't realize you are not exhaling "normally" after taking off the mask, but you do notice the short-of-breath feeling induced by the hyperventilation.
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Tanuki
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Re: New to CPAP but feeling much worse instead of better

Post by Tanuki » Tue Jun 18, 2024 11:41 am

I appreciate the replies here and I don’t mean to sound dismissive, but I just don’t have much patience or concentration when I’m feeling as terrible as I have been, and there’s a lot to reply to that I just do not have the energy or focus to do.

I was able to see a doctor again from the place that did my sleep test and prescribed the PAP machine for me. They said that the pressure may in fact have been too much for me, and they lowered the range to 5–8. But they’re also going to have me do an in-lab sleep test (the initial test I did was only an at-home one), pending insurance approval, to get a better picture of what’s going on with me and what exactly my problem or problems are.

In the mean time, they said I don’t have to keep using my PAP machine until the sleep test if I feel it’s only making things worse, and I was prescribed gabapentin to help with my sleep (primarily for the hot flashes or whatever’s going on with me waking up feeling hot). My priority right now is fixing my sleep to at least get it back to where it was before I started using the PAP machine, and go from there.

Fortunately, this doctor actually believed me when I said that what I’m experiencing isn’t anxiety (or at least not just anxiety—I can’t say that I’m not anxious at all because it’s hard not to be in a situation like this, but I’m very familiar with anxiety, and trust me, this is something different on top of that) and said that it could be a result of the pressure being too high for me.

If I start feeling better I might try the PAP again at the lower pressure setting. I’ll try to use it more during the day, but even if I bring the machine out of the bedroom, I still am literally tethered to it, which makes it hard to do much of anything. I can’t even do some things that I’d expect to be able to do—like playing my Nintendo Switch in handheld mode—because if I turn my head too much (like, if I look down at screen I’m holding) the seal on my mask leaks, which doesn’t happen when I’m sleeping. Plus I can’t talk to my partner at all while wearing the mask. Fortunately they said I don’t have to worry about meeting the 4 hours of use for 21 days every month after all because my insurance doesn’t require it, so there’s no need to stress over trying to wear it for that long every day, so that makes things easier I guess.

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ChicagoGranny
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Re: New to CPAP but feeling much worse instead of better

Post by ChicagoGranny » Tue Jun 18, 2024 12:12 pm

Tanuki wrote:
Tue Jun 18, 2024 11:41 am
they lowered the range to 5–8
What was it before this change?
"It's not the number of breaths we take, it's the number of moments that take our breath away."

Cuando cuentes cuentos, cuenta cuántas cuentos cuentas.

Tanuki
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Re: New to CPAP but feeling much worse instead of better

Post by Tanuki » Tue Jun 18, 2024 1:19 pm

ChicagoGranny wrote:
Tue Jun 18, 2024 12:12 pm
Tanuki wrote:
Tue Jun 18, 2024 11:41 am
they lowered the range to 5–8
What was it before this change?
5–15 the first day, and then I bumped it up to 7–15 the second day and onward after having read here that 5 may be too low for a lot of people, and given that I was feeling short on breath I thought maybe it was because I wasn’t getting enough air pressure.

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ozij
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Re: New to CPAP but feeling much worse instead of better

Post by ozij » Tue Jun 18, 2024 10:20 pm

The only thing you should do, based on reading this forum is get an SD card and put in your machine to be there for when you once again use the machine.

You then use the data gathered by the machine during the night to start a data-based trial and error process, not a willy nilly random one.

Nothing you read in this forum about pressure settings, or EPR settings may be right for you, even if it is right for most people. We are here to help you improve your therapy based on your data.

When people say "use the machine during the day" they don't mean all day long.
They mean use it for a relatively short period while you're sitting and doing something pleasant you can do while sitting. The aim is to get used to all those strange sensations caused by a CPAP machine. It's not a kind of "therapy" that will do something for you while you're awake.

I'm glad they told you no to use the machine till you have an in lab sleep study.

While you're waiting for the study, get an SD card - whichever machine you will be prescribed uses an SD card, and you will need it track and improve your therapy.

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jlsmithseven
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Re: New to CPAP but feeling much worse instead of better

Post by jlsmithseven » Wed Jun 19, 2024 3:42 am

Remember two things. What works for others probably won’t work for you, at least in my case so you have to do your own thing. Also, never give up. Take a break every now and then to reset, but cpap therapy is 100% worth it. It took me from 2022-2024 to finally dial in my pressures, but I messed with it too much because I get overwhelmed by all the settings. Take it one step at a time and one day at a time.