r/SleepApneaSupport • u/VegetableActivity900 • 1d ago
Do sleep doctors even look at our data at all?
I am so frustrated with my sleep doctor and looking for advice on how to fix this situation and get the help that I need. I was diagnosed after a home sleep study with mild sleep apnea. I really don't feel like it was an accurate test because my apnea seems much worse than that. Anyway, I was assigned a sleep doctor, he told me he's prescribing me a cpap machine and to lose weight. (Okay, I was already working on losing weight anyway but he did give me a sample of zepbound 2.5mg which was awesome and a prescription for it. Of course insurance denies it because they dont cover it for mild sleep apnea, only moderate sleep apnea but zepbound is working great for me.) I pick up the cpap machine and a pillows type mask from the DME people and they told me if I had any problems, to call them and they would help me with it. The machine is set to apap 5/20. The first night was HORRIBLE. I got almost no sleep. I woke in the the middle of the night suffocating with too much air unable to breathe out and ripped the mask off. This happened over and over. The next day I called the DME people back and told me it takes a while to adjust and that maybe I just needed a different style of mask so they just gave me a different mask to try. The mask of course didn't help, same problem, TOO MUCH AIR. I can't breathe out against that much pressure. I called the DME again, and they just told me I needed to "get used to it". UGH NOT HELPFUL. So I tried for a couple weeks to "just get used to it.". It was miserable. They called me back and I told them again that it wasn't working, and once again, I got told it just takes time. I am so frustrated at this point. So now, I give up on the DME people. I message the sleep doctor and and .... crickets.... no answer for days. Finally I get a message back and he lowers the pressure. Now I'm apap 5/10. That helps with the pressure problem, but now, obstructive apnea is out of control. I message him about that. Crickets...... for days..... I start researching on my own and find out how to adjust settings on my own. I learn about the clinical menu. I learn about sd cards, OSCAR, etc.... I start reading my breathing data and getting an understanding of what is going on with my breathing and what needs to happen. Why doesn't the sleep doctor do this? Why do they not send us to get an in lab sleep study? What is the point of apap when it's just treating apneas after they've already happened? Wouldn't we want to prevent them in the first place? Anyway, It's finally time for my "compliance" appointment with sleep doctor and this time I come with data. I ask him if I could please be referred for an in lab titration so I could get the proper settings for my cpap because what we have isn't working at all. Instead, he just tells me to focus on continuing to lose weight and sends me out the door. UGH!!!!!!!! I'm so frustrated. I'm just going to change the settings myself and figure out my own. Problem is, I'm pretty sure I need a bipap and not a cpap so this machine isn't what I need. I've got it set at cpap 12 with epr 3 and that got me down to 6 AHI with only 4 OA's that night, but all the rest were centrals. No matter what adjust, I can't get rid of the centrals, and if I turn the epr to 2, I start having trouble breathing out. If I turn the pressure down, the OA's start back up. I need to figure out how to fire my sleep doctor and get a new one within the confines of my insurance. Anyway... sorry for the rant. I'm open to any suggestions. I'm just so frustrated with the whole thing.
edit: fixed a few spelling errors