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Not sleeping + non-compliance = Big Mess - Elaine - 04-28-2024
Hi, I just found this forum and I hope someone can help me. I have had a bipap for approximately 15 years. I have severe apnea. I am disabled, and have many physical and emotional issues that interfere with my sleep. I have always been very faithful in using my bipap, because I think breathing is a good and useful thing. However, the last few years my sleep has deteriorated. The sleep clinic that I used to go to frustrated me. Every time I got a doctor, and I liked all of them to some degree, he left. I went through four doctors in 6 or 7 years. I went to a new one there, and he immediately rubbed me the wrong way, and I was done with them.
My PCP at the time sent me to a place that did an at-home test with their own machine, and they had a doctor that would read it. They recommended some kind of a new machine for me. I was excited at the thought of less fatigue. My PCP had a clinic in a small-town hospital, and one day 5 years ago, the hospital suddenly closed. My records from that test were unobtainable. The new machine was never ordered, because my supply provider never got around to it. My new PCP’s solution was to ignore the problem. A year ago, that PCP retired. Finally, I have a new one that I love. He sent me to a pulmonologist. They were supposedly trying to get those records. But they forgot. I finally now know that they cannot obtain any of my sleep records. Plus, as time has gone on, I have developed a huge resistance and fear of going to bed, no matter how exhausted I am. So I either only get my bipap on very late, usually 2-5 a.m., or I fall asleep before I get my mask on. Therefore, according to Medicare, I am not compliant. Like I said, I’m a mess!
I don’t think the pulmonologist wants me to go back until I am compliant. He gave me a sleep hygiene lecture at the time, and I’m trying, but I know I am not there yet. I feel awful all the time. I’ve been ordering masks and stuff online and paying for them. But I need a sleep study and a new machine. I have had this machine for probably 10+ years, and it keeps telling me its motor life is exceeded. I can’t even think straight anymore. I seldom drive because I’m not usually safe. I wish I could figure out a way to wear my glasses with my full face mask. That way if I would be reading or something and fall asleep, I would already have my mask on. I am too stuffed up to breathe through my nose.
Sorry this is so long. I am so frustrated with myself, and I need to be able to function. I look at my little dog sleeping on my lap and I am envious. Does anyone have any suggestions? I would be very grateful.
RE: Not sleeping + non-compliance = Big Mess - staceyburke - 04-28-2024
One thing you can do is use the mask when you read or watch TV. You only have to use it 4 hours a night and it says nothing about and they can't tell if you are asleep. Do use it any change to get during sleep but stay compliant.
RE: Not sleeping + non-compliance = Big Mess - Deborah K. - 04-28-2024
Your regular doctor can order a sleep study for you if you want. You don't need a pulmonary doctor. But for now, if you download and use Oscar we can help you improve your sleeping very soon. You may or may not need a new sleep study.
Oscar is a free reporting service that provides a detailed daily chart reporting each night's sleep. At the top of each page, you will see information on downloading and using Oscar. You will need an SD card that has 32GB or less storage. If you don't have one you can get one cheaply at Walmart, at other stores, or online. You can post charts that will help us analyze the data and then we would be happy to advise you.
Also, I agree with Staceyburke that using the mask and machine while awake will fill your usage requirements until your therapy improves. Don't give up. We can make this work!
RE: Not sleeping + non-compliance = Big Mess - Elaine - 04-29-2024
Thanks, Stacey and Deborah. My problem with using it in the daytime is trying to read without my glasses. I am going to experiment with wearing them under my mask instead of over it.
Thanks for the info about Oscar. I’m going to try it! That’s pretty nifty!
I’m feeling encouraged.
RE: Not sleeping + non-compliance = Big Mess - Lesley19 - 04-29-2024
I use audible and download books to listen to rather than read. You can set a timer to go off after a set time- say an hour.
RE: Not sleeping + non-compliance = Big Mess - Elaine - 04-29-2024
That’s a great idea! Thanks!
RE: Not sleeping + non-compliance = Big Mess - Lesley19 - 04-29-2024
Good luck. CPAP can be lonely when you are struggling a bit. Be kind to yourself!
RE: Not sleeping + non-compliance = Big Mess - Julie White - 04-29-2024
Sorry to hear of your troubles! I am new to CPAP therapy and I am having similar troubles with sleep disruption due to the position I sleep in.....half stomach/side with one arm under the pillow.
Bottom line......I get NO SLEEP and like you....lie awake all night until I rip the mask off. I'm sure I'll soon get a notice to give their mask back!
You CAN get a new home sleep test with a referral from your Doctor. Good luck and best wishes for better sleep! Could you use a magnifier for reading instead of your glasses? A handheld one or maybe one that lies on the book page or clips to the book?
RE: Not sleeping + non-compliance = Big Mess - Sleeprider - 04-29-2024
There are masks, both full face and nasal that do not fit over the bridge of your nose and leave a full vision. Take a look at the new Resmed F40 full face mask.
RE: Not sleeping + non-compliance = Big Mess - Elaine - 04-29-2024
Hi, Julie, the magnifier is another good idea! I may ask my doctor about a sleep test when I see him in a couple of weeks. Thank you.
I’m hoping that something here will help both of us.
Sleeprider, I will check out that mask. Thanks!
I ordered an SD card and will get it tomorrow. I’m excited to try Oscar. I’m also finding an audiobook before I go to bed. I am really hoping that I will get some sleep tonight. I really want to drive to my counseling appointment in the morning rather than do it on the phone. It’s only 5-6 minutes away…but at least I can still have my appointment either way. A speaker at an event once said not to tackle everything at once. Start by flossing one tooth!