Another Newbie looking for advice/encouragement!

[LadyJ333]

Hi, I just started CPAP 2 weeks ago and am on my second mask. I was having issues with the other one sliding up all night and spent the night adjusting it in between sleep/dreams which totally bummed me out because I am so tired. I am not feeling that rested yet and still have the dark circles under my eyes but hoping that in a month or so I will start to feel human again. (any comments?) I had APO index of 46 and now my pressure is currently set at 8. I saw another thread talking about machines with data and I am wondering what the advantage of this kind of machine would be and wondering if my set up seems to be good for my situation?? I have a Fisher and Paykel machine (with ramp and humidifier) and now a Fisher and Paykel Zest mask. I am hoping this will stay in place. My other mask was comfortable but leaky if I used the nose fitting and sore as hell in the AM if I used the nasal pillows. Anyway, looking for any comments, advice, stories about recovery, etc....I know CPAP isn't a magic bullet but I have put on about 100 pounds in the last 10-12 years and just want my life back!

[bdp522]

It generally take 6-8 weeks for you to adjust to the mask and machine. Once you are comfortasble and sleeping well it still takes time to catch up on years of poor sleep(sleep debt).
Machines with full data are the best. Most of us have the software and generate our own reports to see how we are doing. We also make adjustments using the data we gather. We are very active in our treatment here.
Please post exactly which machine you have and we will be able to tell you if you can get any data from it.
You're right, cpap isn't a magic bullet, but it will help you get your life back!

Brenda

[LadyJ333]

Thanks Brenda! I was a bit discouraged seeing other posts where people said they felt great after the first night!

What is the data you are getting with your machine? What does it tell you exactly? I was under the impression I wasn't able to make any adjustments to my machine other than setting the ramp or adjusting the humidity level....

[LadyJ333]

I am not at home but I think my machine is Sleep Style 200 with Ambien tracking plus....I will verify when I get home....Thanks again....

I suppose I should get out that manual and read over what data I can get too huh? D'oh!

[dsm]

Hi lady3333

Just some comments re the F&P SleepStyle.

I am pretty sure the F&P HC200 range have no data capability - the F&P upmarket range is the HC600 models and I am still
sure they don't have data recording ability. The big feature of the HC600s is the heated hose & the best built-in humidifier
(based on the HC150).

DSM

[rested gal]

Welcome to the board, Lady. Yes, it can take time getting used to all the stuff you have to have now, in order to breathe while we sleep. And can take time to start feeling better. In fact, it's not unusual for people to feel worse than they did before for awhile.

Until we get accustomed to this crazy new way of trying to get to sleep, it can be a tradeoff that leaves a person still feeling worn out, or even more so -- trading the dangerous sleep disruptions that apneas cause that most aren't even aware of, for equipment disruptions that we usually are VERY aware of.

That's where this message board shines. Providing lots of hints and tips to help people work through the equipment issues and make treatment go more effectively and, most of all, more comfortably.

Many people on the board are very proactive about their treatment. And nosy. Many of us want to see as much data as possible about what a treatment machine is recording while we sleep. Besides just the interest factor in seeing what went on while we slept, getting to see treatment data can give valuable information that can help us decide how to tweak our own treatment (if so inclined) or add information to give the doctor or other health professionals when discussing how treatment is going.

Information from some machines tells how many apneas/hypopneas sneaked through despite treatment...what the leak rate was, etc. That is, if the machine is capable of recording anything more than "hours of use." As far as I know, Fisher & Paykel machines record only hours of use. So, the machine they gave you, while it can treat you just fine, is not going to provide any useful information for you or your doctor. If you want to really monitor your treatment yourself, it will take getting a different machine...one that records "full data", as we refer to it on the message board. Detailed data about the overnight AHI and leak rate during treatment.

Here's a link to the names of machines that do record full data, and ones that do not (as of fall 2008:)
viewtopic.php?p=307168#p307168

But much more important to being able to do this kind of treatment is: THE MASK! The mask, the mask, the mask. That's the single more important piece of the puzzle to get right... finding a comfortable mask... or using homemade fixes to make a mask that's alllllmosssst "ok" but has one or two things about it that drive you nuts, or cause pain, into a favorite. You've already found how sleep disrupting mask issues can be. I'd venture a guess that it's discomfort with "the #$% mask" that is really what causes the almost 50% dropout rate among people prescribed CPAP.

So, it's in your interest to keep going back to the store that gave you your machine and mask, trying to get them to keep swapping masks for you (if they will -- different DMEs have different policies about that) until you find a mask that really suits you well. Start thinking like a "lab rat" -- thinking of ways to modify or fix a mask that you almost like, to make it more comfortable. Extra padding, extra strap, rigging the hose overhead so it doesn't tug the mask out of place when you turn over. Also dig into the message board to see what others use to ease nasal soreness when using nasal pillows.

Down at the bottom of my post here, you can click "All Links by rested gal." That will take you to a ton of discussion links, including the "Lab Rat Awards" page, "Hose management" discussions, and much more. Dig into the message board as if you were a medical student studying for the exam of your life -- 'cause that's what this treatment is. The more comfortable you can make it be, the easier it is to "do it."

I'm a big believer in comfort, so if you find things you can do to make it all more comfortable, that can speed up the whole process of "getting used to it", actually being able to "sleep" with all this stuff, and...eventually feeling better.

[LadyJ333]

Already so grateful for the comments and support.....thanks again everyone.... Will post machine data soon...