PhotoWolf wrote: ↑
Sun Nov 24, 2024 11:48 am
Suggestions on what to try next?
Perseverance. As in, you just keep trying to use the machine every night until it gets easier.
I know that's not what you want to hear right now. But learning to sleep with a CPAP machine is a process and it is not accomplished in one night.
You have to make a decision each and ever night before you go to bed: Tonight, just for tonight, I'll try to sleep with the dang thing again and see how it goes. And then you put the dang mask on and you try.
Now for some people, it's a journey with a lot of one or two steps forward, and then a step backwards. But eventually, if you just stick with it, it becomes easier. And once you finally start sleeping well with the machine, then (and only then) can the body start to heal and you start feeling better in the daytime.
For a typical new PAPer? Most new PAPers find the first couple of weeks kind of rough and then things start settling down and by a month or so, they start to notice some improvement in both the subjective quality of their sleep and in how they feel during the daytime.
For a few unlucky ones (like myself) it can take several months to sort out the various sensory problems they're dealing with before they finally start sleeping decently with the machine. But perseverance is the key.
You write:
Time spent with the mask and machine on -- 1 hr 6 minutes
Time spent reading (on my phone screen) to try and settle my brain, get used to the mask, and get into a sleeping mood -- about 20-25 minutes.
Time spent trying to fall asleep and failing because I was too tense -- about 30 minutes
Time spent wondering if I should just give up because clearly it wasn't working -- maybe 10 minutes
Time spent actually sleeping -- 0 minutes
For some people using the machine while awake and far from bedtime helps them learn to relax enough to sleep with the dang mask on their nose. For others, all that does is add to the anxiety of trying to get to sleep.
For what it's worth, I would suggest that you NOT spend time reading on your phone screen while in bed with the mask on in the hope of trying to get into a sleeping mood. The light from electronic devices actually tends to make us less drowsy and less sleepy. If you want to read in bed, then read an old-fashioned book rather than stuff on your phone's screen.
Old insomnia trick: If you're not asleep after trying for 30 minutes, the body is not ready to actually go to sleep (yet). But rather than just giving up, an appropriate strategy is to go ahead and get out of bed and move to a different room. Do a quiet activity that gets your mind totally off the CPAP. Once you are yawning, go back to bed, put the mask back on, and try to get to sleep again.
Yes, this is irritating. Yes, this is hard to do. But just taking the mask off and going to sleep is rewarding the part of your consciousness that does not want to accept CPAP as the new normal. And right now? Your brain is actively working on finding all kinds of excuses for why CPAP can't possibly work for you rather than working on figuring out ways to make it work.
I didn't even try to count the number of times I had to moisten my lips because the steady wind kept drying them out.
For the lips: Licking your lips to moisten them only results in more chapping. It's better to slather them with Lansinoh nipple cream before masking up. Lansinoh nipple cream is a lanolin based cream that is sold to nursing mothers for soothing nipples that have gotten sore, dry, and cracked from nursing. It's sold in the baby aisle of most grocery stores and drug stores. A generic brand will do.
Next, consider the mask. If your lips are getting super dry in a full face mask, there's a decent chance that the mask has sprung an unintentional leak somewhere. So feel around the edges of the mask. The only place where you should feel any air flow out of the mask is at the exhaust vents. If you find mask leaks, then resist the temptation to just tighten the headgear straps. Usually that doesn't work and it can make the leaks worse. Instead, try to pull the mask slightly away from your face and let go so the mask can settle back on your face with the air cushion fully inflated.
You also may want to consider whether you really need a full face mask in the first place. Some DMEs push them on everybody, and discourage people from trying nasal masks or nasal pillows masks. If you are not a dedicated mouth breather during the daytime, there is no good reason to think you need a full face mask at night.
I could feel myself working to breathe against the airflow pretty much the whole time, except when the flow was ramping up.
This is a sensation that I remember all too well from my early days.
It is normal to feel like you are having to work harder to breath against the airflow when you are starting CPAP therapy. And the reason is simple: Your diaphragm and chest muscles are doing some extra work to breathe with the CPAP machine. It takes some practice to get them into shape where breathing with the machine no longer seems weird and where it no longer feels like you're working harder to breathe against the airflow.
But it is also important to try to distinguish between two different sensations: Do you feel that you can't exhale completely and/or that the machine is trying to make you inhale more air that you want to inhale? Or do you feel that you can't inhale completely without working hard to "suck" additional air in and/or the machine is trying to make you exhale more air than you want to exhale? These are both common new CPAPer problems, but they have different "fixes" so to speak. And the fixes for the first problem are likely to make the second one feel worse and vice versa.
It would help us help you if we knew whether you are using a ramp, and if so, what the ramp settings are. (Auto or timed ramp? Starting ramp pressure?)
It would also help to know whether you have EPR turned on and what the EPR setting is. For most people, EPR = 3 makes it easier to exhale fully against the pressure. But if the pressure increase when you start inhaling seems to be out of sync with your breathing, using EPR at a lower setting or turning it off might be a better choice.
I finally decided to quit when I noticed a pins-and-needles sensation in both hands and both feet. One hand or one foot 'falling asleep' for whatever reason isn't unusual, but I've had it in all four extremities only twice before in my life.
My guess is that you were attempting to lie as still as you could possibly lie in bed while trying to get to sleep during those 30 minutes when you were getting more and more anxious about the CPAP. And if that's the case, then as silly as it sounds, your hands and feet probably both did just fall asleep.
A lot of new PAPers have been "active" sleepers when their OSA was untreated: People with untreated OSA often move around a lot in bed simply as part of the body's response to constantly trying to find a sleeping position to minimize the chances of the upper airway collapsing. And then when they put a mask on their nose? Those same people try to fight the urge to just move around in bed, mainly because they're terrified they'll pull the machine off the night table or they'll pull the mask off their nose and trigger a leak. But if your hands and feet are used to moving around a lot in bed, then lying so still that they don't move can easily lead to them falling asleep and starting to tingle. The answer is to move around more in bed instead of trying to remain motionless.
I often tell new PAPers that you need to figure out a way of sleeping in your favorite positions (plural) with the mask on your nose. And if you are an active sleeper who moves around a lot, you will (eventually) figure out how to move with the mask and not create additional problems. (In the meantime? Don't worry too much about leaks and try to make sure that the machine is not so close to the edge of the nightstand that it is easy to pull it off the table.)
The first time was during my episode of a-fib, when my heart rhythm was so erratic my systolic blood pressure dropped into the 80-90 range. The second time was after a colonoscopy, when I started bleeding into the GI tract and lost about a pint and a half in about five hours. I don't know what the cpap was doing to produce the same effect, but I doubt it was anything good. Like the man said: once is happenstance; twice is coincidence; the third time it's enemy action.
If you are that worried about it, you should report the problem to your PCP and to the sleep doc responsible for prescribing the CPAP in the first place and the DME who set you up with your equipment.
But as I said earlier, my guess is that your hands and feet fell asleep because you were lying so still in place in an attempt to not cause a leak or pull the machine off the night stand.
I turned the machine off, took off the mask, and that was it for the night.
You're here, and hopefully that means you are sincerely wanting to make CPAP work. If so, read what I've written and try some ideas and keep in mind that it is a very, very rare new CPAPer who puts a mask on their face and has "success" the first night in any meaningful sense of the word "success."
If you're looking for validation for just up and quitting after one night where you didn't ever fall asleep with the mask on? This is the wrong group.
