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+--- Thread: A lost and discouraged CPAP newbie.... (/Thread-A-lost-and-discouraged-CPAP-newbie)
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A lost and discouraged CPAP newbie.... - yetanotherusername - 01-05-2018
Hello everyone,
I’m new to this site. A little about me:
I was diagnosed with OSA about a month ago, have been on CPAP (auto) for about three weeks. I never had a full sleep study, insurance wouldn’t pay for it, so I was just given a machine with a pressure range of 4-20.
After trying a couple different masks I settled on the nasal pillows, which I have completely gotten used to. However, for the whole time I’ve been using it, my AHI has basically hovered around 9-13 with one isolated night at 4.4. The report always shows I had 100% seal.
According to the app that goes along with the machine, I’m having a significant amount of central events and hypopneas which are the majority of the events, with obstructive being the least.
Now, I know that there is a supposed adjustment period that I’ve heard mentioned over and over, but my mom also recently started on cpap and has had absolutely none of the problems I’m having. From the get go, her AHI has always been below 5. So I have a hard time swallowing the idea that it’s all just going to magically get better. If it seems like my words have an edge to them, admittedly they do. I’m just very frustrated and I feel like if somethings going to go wrong, it is usually with me.
Most importantly though, if you can believe it, I actually feel about ten times worse using the cpap than not. I wake up and feel like I’ve been run over by a truck. So while I have adjusted to wearing the mask at night, I’ve just stopped wearing it for no way because I simply can’t function during the day.
Does anyone have any ideas on what I can do to make it work for me? Why am I having so many central events and hypopneas?
By the way, I am aware of Sleepyhead and I have downloaded it and uploaded some of my data to it, but frankly I have no idea how all of you can even interpret any of it—it’s too convoluted for my patience level. So to be completely honest, so far I’m not really enthused about using it.
RE: A lost and discouraged CPAP newbie.... - Sleeprider - 01-05-2018
Some people that start CPAP to treat obstructive apnea, end up with complex or central apnea with CPAP pressure. I think the statistics are about 15% for this complication. You're not alone. Of the people that have that complication, roughly 35% will adapt to CPAP and experience good treatment. That seems to occur within a month or two. It is important with complex apnea to pay very close attention to the data to optimize treatment. In general, most people with this issue do better when their machines are set to fixed pressure or a very confined pressure range, and when Flex or EPR is not used, or minimized. In other words, steady pressure to resolve obstructive apnea, but not varying pressure which can increase centrals. The best treatment for central and complex treatment may be bilevel with a backup rate, such as ASV (adaptive servo ventilation), but that is rarely the treatment of first choice, and may have complications for some people.
The best way for us to help you is if you download the free #Sleephead software and post some data on your results. The first two links in my signature describe how to do this. We have many many members that have been through the same experience you are having, and gotten good results, either with auto CPAP or by eventually moving to other technologies. It's not that easy, but if you're determined to improve your results, we can help you to understand what is happening and appropriate countermeasures. Welcome, and good luck!
RE: A lost and discouraged CPAP newbie.... - kiwii - 01-05-2018
(01-05-2018, 04:12 PM)yetanotherusername Wrote: ...By the way, I am aware of Sleepyhead and I have downloaded it and uploaded some of my data to it, but frankly I have no idea how all of you can even interpret any of it—it’s too convoluted for my patience level. So to be completely honest, so far I’m not really enthused about using it.
Welcome! I'm glad that you found your way here.
The important thing is to post your data, like Sleeprider mentioned, and then the knowledgeable folks here can help to interpret it. Eventually you will start to understand it too, but for right now that isn't necessary.
I've only been here since September and have seen lots of people get helped. I'm sure they can help you too. Hang in there!
RE: A lost and discouraged CPAP newbie.... - yetanotherusername - 01-05-2018
Thanks for your reply. I had read about complex sleep apnea, but since what I’m experiencing apparently resolves for some people, and I’ve only been on it for a few weeks, I suppose it’s a bit too early to tell.
I have my data uploaded to Sleepyhead so I will look into get it uploaded on here and go from there. Thanks again :-)
(01-05-2018, 04:53 PM)kiwii Wrote:Thanks for the warm welcome! :-) After reading through many of these posts before signing up, I’m pretty confident I will be able to get some answers here. So far it’s 1000 times better as a resource than my own doctor.(01-05-2018, 04:12 PM)yetanotherusername Wrote: ...By the way, I am aware of Sleepyhead and I have downloaded it and uploaded some of my data to it, but frankly I have no idea how all of you can even interpret any of it—it’s too convoluted for my patience level. So to be completely honest, so far I’m not really enthused about using it.
Welcome! I'm glad that you found your way here.
The important thing is to post your data, like Sleeprider mentioned, and then the knowledgeable folks here can help to interpret it. Eventually you will start to understand it too, but for right now that isn't necessary.
I've only been here since September and have seen lots of people get helped. I'm sure they can help you too. Hang in there!
I’m definitely going to get my Sleepyhead data uploaded :-)
RE: A lost and discouraged CPAP newbie.... - jaswilliams - 01-05-2018
Until you get to 4 posts you can’t can’t post links to your data. So upload your charts and data to imgr then put a space in the http:// part oft the url such as h ttp://restoflink/here and we can find your charts and look at them. Take a look at the two links in my signature
RE: A lost and discouraged CPAP newbie.... - trish6hundred - 01-05-2018
Hi yetanotherusername,
WELCOME! to the forum.!
CPAP therapy can take time for some people to get used to, just stick with it.
You have come to the right place for guidance.
Good luck on your CPAP journey, hang in there for more responses to your post.
RE: A lost and discouraged CPAP newbie.... - Sleep2Snore - 01-05-2018
Hi yetanotherusername,
Welcome to the forum.
Once you get some data for the others to look at you will get some advice on what to do to help matters.
You might need to change machines, however, things might settle down after a month or so, it does take some people a bit of time to get used to air being blown at them.
When you think about it it is not natural.
RE: A lost and discouraged CPAP newbie.... - SarcasticDave94 - 01-05-2018
yetanotherusername,Being persistent will pay off in the end. Your story is very much like mine and lots of others here. And like us, you will eventually get the success story we have. Others have mentioned posting charts, so my advice for now is Don't Quit. I initially made that mistake and cost myself a year where I could have invested in being closer to the results I'm having now. Stick with us, and we will get it figured out.
Dave
RE: A lost and discouraged CPAP newbie.... - yetanotherusername - 01-05-2018
(01-05-2018, 06:25 PM)SarcasticDave94 Wrote:Thank you for the kind words! :-) I’ll get to posting them.
Being persistent will pay off in the end. Your story is very much like mine and lots of others here. And like us, you will eventually get the success story we have. Others have mentioned posting charts, so my advice for now is Don't Quit. I initially made that mistake and cost myself a year where I could have invested in being closer to the results I'm having now. Stick with us, and we will get it figured out.
Dave
RE: A lost and discouraged CPAP newbie.... - Gary1of2 - 01-05-2018
Just dont give up. Each one of us takes a different amount of time to adjust to pap. Some people I have heard up to 6 months some sooner.Be patience it willcome.