Keeping the weekly post warm until @alyaza comes back 🙂

What’s everyone been up to? Any plans for the weekend?

  • YourHeroes4Ghosts@beehaw.org
    link
    fedilink
    English
    arrow-up
    16
    ·
    1 year ago

    This week is being a bit of a roller coaster. I got a CPAP machine yesterday after having been on a waiting list to get one for years. I was so happy to get it! But last night was by far the worst sleep I’ve had in ages- the machine feels like it’s suffocating me, and I apparently pushed it off my face at some point during the night, but the ridiculous app that came with the machine does not tell you what time you removed the mask or for how long, and apparently if you wake up and take a long time to fall asleep again, the app will totally ignore the initial period of sleep.

    So today I’m exhausted and irritable, and woke up to excited messages from friends who were expecting the CPAP to change my life from the very first night, which was difficult to cope with, though of course I know they meant well. I hope things will get better.

    • borkdd@lemmynsfw.com
      link
      fedilink
      English
      arrow-up
      11
      ·
      1 year ago

      It can be really tough adjusting to the CPAP. And even if you’d slept with it properly, there’s no guarantee you’d feel great in the morning. Many people take weeks or months to see significant results as they make for lost sleep. That was the case for me. I still struggle with it but I’m doing better now.

      I’m not sure what you mean by the machine suffocating you, but it could be a couple of things. One, if you don’t have ramp on, it’ll turn on full blast first thing which can be…jarring. It’s possible that your mask isn’t fitted correctly or that it just isn’t a good match for you. That’s ok! That’s why we have people to help us fit them and many masks to choose from.

      I’m not sure what machine you have, but if you can put an SD card in it, you might be able to get more detailed data from that.

      • YourHeroes4Ghosts@beehaw.org
        link
        fedilink
        English
        arrow-up
        5
        ·
        1 year ago

        Thanks for the kind words. When I say I feel like I’m suffocating, I mean that I feel like I can’t exhale properly, which to me feels like suffocating. But it’s only my first night with the machine and I don’t intend to give up. Ramp is turned on, and the device says I have the nasal pillows placed properly. The device has an SD card and I plan to install OSCAR to get better data, but because of the way the system works where I live, it’s better for me not to take out the SD card every single day if I can avoid it (I don’t own the machine, it belongs to the health service).

        • jlarex@beehaw.org
          link
          fedilink
          English
          arrow-up
          5
          ·
          1 year ago

          Try experimenting with turning off the ramp. I always felt like I was struggling to breathe until I turned off the ramp on mine, it was so much easier to breathe with it turned off.

          • YourHeroes4Ghosts@beehaw.org
            link
            fedilink
            English
            arrow-up
            3
            ·
            1 year ago

            I think that may be a good idea, because I noticed that when I get up in the middle of the night to use the bathroom, then come back and reattach the hose, the higher pressure is actually more comfortable.

            Last night I slept a little better and didn’t push the nasal pillow off in my sleep, so there’s some progress.

        • fortified_banana@beehaw.org
          link
          fedilink
          English
          arrow-up
          3
          ·
          1 year ago

          It definitely takes a bit to get used to that, especially on the exhale. I found that it became better over time, especially once I was able to stop focusing on the mask and my breathing. I don’t use the ramp up personally, as I find it more comfortable for me. Definitely keep at it, and you should be able to talk to your provider if you keep having issues. I had to go through a few settings/mask types to find the right one.

      • YourHeroes4Ghosts@beehaw.org
        link
        fedilink
        English
        arrow-up
        4
        ·
        1 year ago

        Yeah, it’s a big change. My adult son has been using CPAP for about two years and I’ve seen how much it helps him, so I am not giving up yet by any means. I’m just feeling whiny because I’m so tired of being exhausted and I guess I thought I’d see a huge benefit from day one.

    • Boozilla@beehaw.org
      link
      fedilink
      English
      arrow-up
      2
      ·
      1 year ago

      Mask fit and machine settings can be tricky to get dialed in, and they make a big difference. There’s a pretty good YouTuber with a channel called CPAP Reviews that may be useful for you. Your doctor and DME provider should be a good resource, and in many cases they are…buy sadly this can be hit or miss.

      • YourHeroes4Ghosts@beehaw.org
        link
        fedilink
        English
        arrow-up
        5
        ·
        1 year ago

        Thanks for that. Sadly, I’m far more likely to get useful information from the Internet than I am from my medical team. I actually turned to YouTube to “fill in” details the technician didn’t bother to tell me- namely that “mask leak” with a nasal pillow can be caused by opening your mouth. I also was able to work out, thanks to videos, that the nasal pillow I was told to use was a terrible fit for me, which is why I felt like I was suffocating and unable to breathe the first night, but the correct size was thankfully in the box. It’s been much smoother sailing since I swapped to the correct size pillow.