New and hoping for encouragement or advice

[lapsarian]

I just got a CPAP machine (Resmed Airsense 10) two and a half weeks ago. I was feeling very positive about it - I knew that it would take a certain amount of adjusting, but I was ready to put in the time. The first few nights were real tough, but I figured it would get easier. The problem is that it seems to be getting worse rather than better, and I can't tell if I just need to stick it out or if I'm doing something wrong.

On paper, things are definitely better - I was at 17 AHIs during my sleep test, and with the CPAP I fluctuate between 3 and 10, depending on the night. The problem is that it takes hours to fall asleep, and I'm waking up 6 or 8 times during the night (as opposed to once, maybe twice a night without CPAP). So even though my AHIs are way lower, I feel like absolute crap during the day. 

I'm not really even sure why it's so hard to fall asleep or why I keep waking up. It sort of feels like I have to pay attention to my breathing, or something - I don't drift off the way I normally do. I've worn the CPAP for hours during the day to try and get used to it, I've tried turning the Ramp off and on, my sleep tech raised the lower-bound pressure from 4 to 6, I tried a different size of nasal pillows, but it still always feels like it takes effort to breathe with the CPAP. I bought a full-face mask to try instead of nasal pillows, in case that makes a difference, but it's all just very discouraging right now.

I think part of why I'm so discouraged is that, on Thursday night, I took the mask off entirely after lying awake for more than two hours, and slept great after that. Then I went on a trip this weekend without my machine, and slept great both nights. So now I'm really dreading going to bed tonight and having to use the CPAP machine again... which probably isn't helpful, and I wish that I could keep that positive attitude I had for the first two weeks of this! 

If anyone has any advice or encouragement, I'd really appreciate it. I don't want to give up on this, it's just so hard to stay positive and determined in the face of this indefinite struggle. Thank you very much!

[staceyburke]

Your situation is not new. You are having problems with really no help. You can and will get help here there are many very knowledgeable people that monitor this board and are better than any tech or dr I had in my 20+ years on Cpap.

But before they can help they will need data from your machine AND not from myAir. You need to download OSCAR from the top of the site (totally free as is everything here). You also need a SD card in your machine while you sleep. If you don’t have one you can buy one at a camera store, Best Buy, target etc. size 8 gig by to 32 gig whatever is cheapest.

Then post a nights Oscar charts and you will get help. Please don’t quit you can do this and start feeling better.

[lapsarian]

Thank you! I should have said - after the first few days, I did get an SD card and OSCAR. I've been recording that data, but I wasn't sure how useful it is here? The CPAP machine does seem to reduce my AHIs, I'm just having such a struggle actually falling asleep with it on, or staying asleep once I do. But I've got some data there, and I could post something if it would be helpful!

[staceyburke]

Please do I know people here will help. To speed it up post the charts I have in my signature on the bottom of the post.

[lapsarian]

Please do I know people here will help. To speed it up post the charts I have in my signature on the bottom of the post.

Okay, sure! I've attached two screenshots. The one with an AHI of 5.5 is probably the best sleep I've gotten - I managed to get around 8 hours' sleep and only woke up the once. The one with an AHI of 9.91 was the very next night, and I don't think anything changed, but my sleep was terrible. Took forever to fall asleep, kept waking up (much more often than the two times I got out of bed to use the bathroom), felt miserable the next day. 

I've had nights with even lower AHI than the 5.5 one, some as low as 2.7, but I felt worse the next day than I did after the 5.5 AHI night, which I think is due to how little I woke up. The 2.7 AHI doesn't seem to do much good when you're waking up every 45 or 60 minutes.

[staceyburke]

Ok I will give you a couple of ideas, tomorrow post tonight’s and some of our best will join in. Tonight they probably will not because they are on east coast time and usually have quite for the night.

Your good night had few centrals (CA) events. They happen BECAUSE your therapy is working to well. Centrals happen when your CO2 goes down because you are actually getting rid of more using Cpap. These are treatment emergents and go way down after you get use to treatment.

I would do this for tonight, change

Min 7
EPR 0

It will make it easier to breathe and will cut down but not eliminate the centrals.

[lapsarian]

Thank you, Stacey! I'm afraid I didn't see this in time, and I'm also not sure I understand it. Isn't the EPR what makes it easier for me to exhale? I often feel like it's difficult to exhale, or maybe just that it takes more effort/conscious thought than normal.

Either way, I tried the full-face mask last night and it actually went a lot better for me. I had some trouble at first just getting the fit right and getting used to it, but OSCAR had me at an AHI of 0.39 and I didn't feel like it took so much concentration or effort to breathe. I still woke up a lot, but I found it much easier to drift back to sleep. I'm going to try that another few nights and see if it keeps making a difference!