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[CPAP] Getting started with CPAP - what I learned from my first 6 months
#1
Getting started with CPAP - what I learned from my first 6 months
Here are my key takeaways in somewhat priority order. It’s also a list of things I wish I knew before I started. In my first six months, I went from AHI of 19 to zero point something. 

  1. myAir score doesn't mean anything (beyond fulfilling your compliance period). Following the score can actually be detrimental to your progres! The scoring is out of whack - the score penalty of actually dying is the same as taking your mask off 6 times or 30 minutes less usage. So, take the mask off during the night as many times as you need (adjust the mask, go to the bathroom etc), don’t stay awake in the bed just to get a higher usage, attend the leaks - leaks matter more than what the score is indicating etc… 
  2. Stick an SD card into your machine as soon as you get one. You don’t need to know why just yet. Just putting it into the machine is all you need to get started, you don’t need to worry about anything else. 
  3. CPAP will change your life, hopefully for the better. However it will not resolve your underlying sleep problems if you have those. Work and focus on your sleep hygiene (e.g. google "12 Healthy Sleep Hygiene Tips" + avoid alcohol altogether). Don’t overload the expectations on CPAP. For me, the brain fog and memory issues have improved somewhat, but not as much as I would’ve hoped. My sleep is still terrible averaging 5 hours per night with quite little REM and Deep Sleep. Yet, it’s remarkably better from where I started from. 
  4. There is a huge amount for resources out there
    1. This Apnea Board 
    2. CPAP Reviews YT 
    3. Reddit r/CPAP 
    4. CPAP Talk Forum
    5. Many others.
  5. Finding a good mask is a journey. I went through 5 sets of head gear, 1 to 3 cushions for each before finding just the right one for me (ResMed AirFit F40 with Small Wide cushion). I really wanted to make nasal pillow masks work, but it wasn’t meant to be. Without tape, I blow air right out from my mouth and with tape my cheek hamster like no tomorrow, making sleeping nearly impossible. However, the chinstrap I got for nasal mask purposes has been a key to success with a full mask - I never would've tried that without taking the steps with nasal mask+strap first. 
  6. Taping your mouth is a thing. I was really skeptical about taping my mouth initially - especially with a full mask. However, now I feel it was the most important step in my journey. I cut a horizontal slit to the tape, so I can still breathe if for example my nose gets fully blocked. The tape helps me to sleep on my side and prevents my mouth from drying out. Previously I used Xylimelts to prevent my mouth from drying out, and I hated the taste in the morning - and sleeping with something in my gums in general, but they worked and are much better than letting your mouth dry out. Taping also helps with using a full mask with facial hair - to some extent. 
  7. Sleeping on your side. I used to be a supine (back) sleeper, and wasn’t able to sleep on my side. Using my chin strap and tape I was able to start sleeping on my side. This reduced the AHI the most - around 6-8 events/hour difference.
  8. Inclined sleep. If (for example when traveling) I need to sleep on a flat bed, my AHI goes up about 3-5 events/hour. There are adjustable bed wedges that work equally well to a fancy bed with a fraction of the cost.  
  9. OSCAR (there’s also SleepHQ, but I haven’t tried it) Ok, this is what the SD card was for. These are downloadable SW that can be used to analyze your sleep data with great detail. People in the forums are very knowledgeable and getting help analyzing your specific circumstances is easy and straightforward. I feel people start with Oscar/SleepHQ too early, there’s no need to dive deep right away. Get familiar with the equipment and the therapy and after a few weeks, you’ll be happy to have the data from the beginning and can start checking out the data more regularly and asking questions in the boards. Naturally you can do this right from the beginning as well, but it is unlikely that you can’t find the basic information from previous discussion. Getting into the therapy is in my opinion much more important than the detailed analysis. Then, you can ask questions that are more specific to your problem - when you have the base knowledge on what and how to ask it and what is the relevant data to the problem. 
  10. Gadgets. In addition, I have Fitbit Charge 6 ‘sport band’ and Wellue SleepU oxygen monitor. Initially I followed the results intensely, nowadays, not so much. I think you can live without them perfectly fine. The nicest thing is that you can double check that the Oscar data is valid (e.g. oxygen saturation level drops when you don’t breathe for a while (gasp!) or what the flow rate looks like when you’re awake vs sleep) but after a while it becomes redundant. The sleep analysis in Fitbit is way too flaky to give it any weight, and even if it would be accurate, it would be hard to make the data actionable (yeah, I’ll make sure to catch some more of that deep sleep next night…).
  11. Biggest issue I still have remaining is getting bloated/aerophagia. This is one reason I wake up early / have worse sleep than I should. GasX is not making a difference and I’ve adjusted the pressure with my doctor to a level that doesn’t leave room to go down. Plan is to tough it out and hope it gets better over time. 
  12. Finally, I know you can adjust the ‘doctor’ settings of your machine yourself, but due to insurance reasons, I haven’t done that. Instead, I’ve gone through the settings with my doctor. It has worked fine and the lesson to learn here is that any setting change should be given at least a week or so to see the impact before making further adjustments. And it’s always better to change one setting at the time, so the impact is clearer.
(sorry, I had to remove links from my post due to being new member)
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#2
RE: Getting started with CPAP - what I learned from my first 6 months
Very helpful summary!
I too suffer the mouth leaks and use a FFM.
I’ve tried the chinstrap but I can’t get used to it. The feeling of confinement from the cap/strap plus the mask is overwhelming to me. It’s like my whole head is encased.
I’ve tried taping the last two nights. Not terrible but still need to get used to it. I’m doing the little slit as well.
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