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.