This topic contains 6 replies, has 4 voices, and was last updated by  Brittany Foster 1 month, 4 weeks ago.

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  • #19169
     Brittany Foster 
    Keymaster

    There are many different treatments and medical devices that our PHriends have. Some of those devices include things that assist with sleeping like BIPAP machine, noninvasive ventilators (NIV) and CPAP. I have used both a BIPAP and more of a ventilator machine for my sleep therapy and also as part of my therapy during the day. This has helped with my central apnea and combined obstructive apnea at night.

    One of our members recently asked a question regarding some tips for sleeping with her new vent machine at night. She is wondering if anyone has suggestions for how to sleep better with the machine and get herself adjusted to it?

    Some suggestions I have are:
    1) Make sure to get comfortable with the mask BEFORE using it at night. Wear it during the day if you can to get your body used to the feeling of it
    2) Make sure you have a space for machine that doesn’t allow too much light to escape from it (sometimes the screen of it lights up through the night and this can disturb sleep if you are sensitive to light in the room)
    3) Be sure that the mask and head piece are a good fit for you. Sometimes they have smaller head pieces that only cover the nose or just go into the nostrils vs the full face mask. Talk with your doctor about what is best for you
    4) Even if you have to start off gradually with just a few hours of use a night, it still is better than nothing
    5) Be honest with your doctors and medical team about any worries or anxiety you have before using it or anxiety that comes up while using it
    6) medications are OKAY to help relieve some anxiety to help you adjust to the machine. I had to take a low dose of ativan or klonopin when I was first given my mask because it caused a lot of traumatic memories of hospitals when I first had it on.

    What are some tips or advice to better adjust to the mask that you could share? Do you use sleep therapies at night too or even during the day as part of your treatment?

  • #19222
     Douglas Knuth 
    Participant

    Brittany, your advice is very spot on. My bipap is set for the maximum air pressure and leakage can be tough to keep in control at times. For me, whose beard grows very quickly it is very important for me to keep my beard shaved very close if not completely gone. Also, it is very important for me to wash/clean off any facial oils off my face and the mask has to be scrubbed clean before using every night. Any dead skin, oil etc will leak badly, make funny noises that will keep you up just as you nicely get to sleep. It takes time to get ready each night but is better than being woke up during the night to air burps/leaks. The right mask also helps greatly. My mask has an adjustment knob that allows me to shift the mask pressure away from the forehead and cheekbones. My mask HAS to be very tight against my face though at maximum pressure. It was mashing my cheekbones bad without using that adjustment feature. I wear mine at night and during the day unless I just unexpectedly nod off while watching tv before I can put it on. But it sure helps keep me alive and better rested. Dropped from an average of 36 CSA breathing stops an hour without bipap to about 7 down to under 1 time an hour. It’s scary knowing that my brain is failing my respiration without assistance. Good subject Brittany.

    • #19247
       Brittany Foster 
      Keymaster

      Thanks so much for your input on this, Doug! It seems like you are really taking care of yourself and your machine and that’s so important. The BIPAP just ends up becoming part of the daily routine and taking care of it and making sure it is wiped down, filter and tubing is clean, etc is just as important as wearing it . I am sure you noticed so many improvements from going to so many events per night before it to now experiencing so much less. What are the most benefits that you have seen from it? I’m glad you found ways to make the mask fit and work better for you. It does take some adjusting that’s for sure!

  • #19250
     Jimi Mcintosh 
    Participant

    Find a comfortable mask that fits properly and stays in place at nite.
    Stop apologizing to your significant
    Other and family. Keep the machine, hose and mask as clean as possible.
    Use vinegar and water to soak the mask and hose a minimum of every 2 days. Failure to keep it clean will cause infections and pneumonia. Tell yourself
    That you are beautiful and it is a head-start on Halloween LOL. Only use
    Distill water, cuts on moms andv bacteria

    • #19266
       Brittany Foster 
      Keymaster

      Cleanliness is so important ! Especially because we do NOT want any other added stress on top of what we are already dealing with with our lungs. Do you use yours just at night or do you have times during the day where you use it too? How often does your supply company give you new supplies for it? Mine is every 2 months they call me to check if I need anything. They are a pretty good company though and if something breaks or I need more of something they are really good at getting back to me through phone and delivering it to my house. Having a good supply company is just as important as having good doctors !

  • #19263
     Jen Cueva 
    Participant

    Incredible tips, y’all! I require oxygen use for sleeping, none of the other devices. I am familiar with the BIPAP and CPAP. It looks like y’all have covered some important, useful tips for others needing these devices.

    I love that this group shares their experiences as others are battling some of the same problems.

    • #19267
       Brittany Foster 
      Keymaster

      So true, Jen. Especially with things like using medical devices and in our case, oxygen, it is encouraging to see people living as full of a life as possible with the cards we have been dealt. These forums are inspiring to me and everyone who participates is so valued !

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