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Hello


#1

Hello,
I just stumbled upon this site not too long ago. I have been diagnosed with severe OSA and am learning to live with a CPAP mask, slowly. It has been difficult but I see that I am not alone in this. The first month I was diligent the first few days but then was frustrated and didn’t touch the machine for a month. I also have cardiac sarcoidosis and CHF. I was starting to get more V TACH and a chance that my defibrillator would shock me so that made me get back to trying my CPAP, as I need REM sleep to help repair my heart. It’s getting more routine but I don’t feel I’ll ever get used to it.

Sleep used to be something I look forward to each night. I love to read until I fall asleep but now sleep is another chore.


#2

Hi Heidi
I remember when I started using my cpap mask, it was really hard to adjust and I would take it off in the middle of the night. I don’t think I got a lot of sleep that first month. Then I started to leave it on as nights passed. I began to sleep better and longer. Fast forward 10 years now, I can’t sleep without it. Lol

Give yourself time, don’t give up. If you take it off so be it. You’ll get to where you need to be and sleep happy.

You got this!


#3

Aloha Heidi,
I also have severe OSA and COPD. When I first started with the CPAP I used the full mask and it took a couple of weeks before I slept more than 6 hours. About 6 months with the full mask it started to drive me crazy. My supply therapist had me change to a nasal pillow style and I am now sleeping a solid 6-8 hours every night. Have a discussion with your supplier to see if a different style of mask will work for you.


#4

Thanks Roxann. I appreciate knowing it will get easier and that you can’t sleep without it now.

I think there is a direct correlation between me not using CPAP and getting ventricular tachycardia. I just received another call this morning that I had VT Saturday night around midnight. That was the night I took my mask off after less than 2 hours. It happened 2 weeks ago too. My heart is already compromised so this shouldn’t happen to others but it is quite the motivator for me to wear my mask, lol.


#5

Aloha Sharon!

I do have a nasal pillow and I worried this wouldn’t work well with me because I am a mouth breather after I fall asleep. I am wondering how to rectify this. I have heard of chin straps and taping your mouth. I’d try the tape but I put lip balm on my lips because otherwise I feel my lips drying out. Of course that wouldn’t be a problem with a nasal pillow.


#6

Heidi, we do what we need to do for our lives to be managed and to have some quality. I keep telling myself, it’s beautiful getting older. LOL That’s how I deal with all the things that come along this journey called life. It helps. Keep on doing your best and one day you’ll think back on how far you’ve grown and it will make you laugh so hard, your stomach will hurt. It’s these moments that make memories joyful in the days to come.

You got this!

Roxann


#7

Aloha Heidi,

I am a mouth breather also. When I changed to the nasal pillow style, they did not ship me the chin strap at the same time because they were out of supply. It was 2 weeks before they did and I had started using the nasal pillows without and still use it without
the chin strap. Apparently the pressure from the CPAP creates a suction that keeps my mouth closed enough to make the therapy effective.


#8

Hi Sharon,

Mine didn’t come with straps nor did they mention it should have. I’ll ask about it but maybe I wouldn’t need it as you haven’t. I’ll have to give it a try.


#9

Hi Roxann,

Yes, I’ll keep going. Looking forward to the day it feels normal and has a significant impact on my health and how I feel each day.