Hello Everyone and a little reassurance please

[idamtnboy]

As others have said, Mark, what you are feeling and dealing with is perfectly normal human behavior. Change can be very disruptive, and none of us likes to have our lives disrupted. In fact, even though you know the long term outcome will be quite positive, you very well may be grieving what you have lost - an untethered sleep life. The thought of spending the rest of your life connected to a machine can be very unsettling. But, as the old saying goes, "Time heals." You are going through the process of establishing a new 'normal' for your life. How long it takes, no one can say as we are all different. Even if you resist it and fight it, you will get used to it, and that damn hose and mask will become a normal part of life, just as normal as your favorite pillow has been. Hang in there!

[DreamOn]

Welcome, Mark!

[KThund2]

So glad to find this thread. I had a great first night and a mediocre second night. Could swear the mask was leaking, but it never set the alarm off. Felt like I woke up a lot to adjust it -- but still, got better sleep than I did pre-CPAP! I guess it's all a learning process.

[mstarkman]

Thanks everyone for all of your help!!!

Each of the nights since I started this thread have gotten progressively better. I feel more rested and alert. I'm still not getting all of the number of hours of sleep I should be getting, but I am getting better quality.

I have changed several little things, but I think there are a couple that have really helped.

1. Loosening the mask to the point where it is just snug. I don't feel like I am worrying about it leaking as much.
2. I changed the position of the hose so that run above my head and pillow and not across my body.
3. I watch something on my iPad before sleeping and I have the CPAP machine while I am watching it.

I have gotten at least 6.5 hrs. of sleep each of the past three nights!

[Pugsy]

I have gotten at least 6.5 hrs. of sleep each of the past three nights!

Excellent... Really, I mean it. It took me well over 6 months to reach 6 hours of sleep and that was with sleep aids.
You are doing great. It will get better and easier as time goes by.

[roster]

Data???? What is your data showing? Apneas, hypopneas, mask leak, snores???

[mstarkman]

Data???? What is your data showing? Apneas, hypopneas, mask leak, snores???

Good question. How do I get that from my machine?

[roster]

Data???? What is your data showing? Apneas, hypopneas, mask leak, snores???

Good question. How do I get that from my machine?

Try this: http://www.resmed.com/au/assets/documen ... ow_eng.pdf

Maybe some of the Resmed users will post other help.

I see that plenty of well-meaning people here gave you reassurance, but nobody told you how to check your data to see if your therapy is working worth a damn.

Reassurance, schmee-assurance, help him with his data and leave that nonsense until all his settings are optimized.

(Edited to remove four-letter word.)

[rested gal]

I see that plenty of idiots here gave you reassurance, but nobody told you how to check your data to see if your therapy is working worth a damn.

While it's nice to be able to check efficacy data, that's NOT a MUST (imho) if a person is experiencing subjective improvement:

Each of the nights since I started this thread have gotten progressively better. I feel more rested and alert. I'm still not getting all of the number of hours of sleep I should be getting, but I am getting better quality.
---
I have gotten at least 6.5 hrs. of sleep each of the past three nights!

Reassurance, supportive words, and good suggestions about how to adjust a mask are pretty important to a new user struggling to get used to doing "CPAP" -- especially in getting used to trying to sleep with a mask on.

Of course it's a good idea to "check the data." But support and encouragement are probably much more important for a new user to hear right from the get-go.

I was glad to see plenty of smart people helping mstarkman sort out how to get going better with "CPAP."

[roster]

The man has a machine that gives good data on the display and he doesn't know how to use it. Not a soul on the forum knows whether his pressure settings are correct, whether his mask leak is under control, and whether or not he is still have many breathing events.

All of the people replying are people who regularly rely on their data and not one of them mentions to him about the data until my post.

Of course someone may feel better when they get friendly words from fellow CPAPers. But that does not mean the therapy is working properly and if it is not the friendly words may just prolong the misery and result in a bad crash days or weeks later when the patient realizes he is not doing well.

His first priority should be to look at his data. He asks how to read the data on Thursday and on Sunday night not a soul has given him a clue. Very disappointing.

But I still give the forum high marks because despite this thread it continues to do so much for so many.

[Big S]

The first two months of my therapy, I didn't know who to go to or how to solve basic problems with my machine. I relied on youtube and what I was able to find on google. I was so sleep deprived, I know my brain wasn't functioning normally. I found a local support group that had about 125 regular attendees. The main presenter had much to talk about because a "clock" had been added to a newly released product. I didn't care about the clock but had many specific data questions. The moderator acknowledged the usefullness of my questions (I think) and posed the question to the audience: Is anyone here interested in getting data off their machines? I was the only one in the room who raised my hand. It was the last time I attended that meeting. I did however find out about cpap.com and it lead me to this site. It's been about 5 months since that occurance and now I know about my data, but more importantly to me is the encouragement and support that is evidenced by members of this site to relative newcomers. We need to know we're not alone in this therapy and that the problems we are experiencing are probably not new. Many newcomers do not make it past three months and often just a little encouragement and thoughtful advice are all that is needed.

[robysue]

I think both Rooster and Big S make solid points here.

In the early going of my very difficult adjustment to xPAP, the data coming off the S9's LCD was so GOOD (AHI < 1.0 most days and 95% leak rate < 5.0 L/min all days) that it kept me motivated to keep using the CPAP every night, all night long in spite of the fact that I was crashing and burning as far my daytime functioning levels were concerned.

But the need to find others who had problems with CPAP-induced insomnia, air blowing in eyes through the tear ducts, aerophagia, and the general overall sensory overload coming from learning to sleep with a hose attached to my face was overwhelming. The fact that I felt like some kind of a freak every night also led to my need to connect in a very real sense to other hoseheads. And cpaptalk.com has given me that kind of human connection that I've needed to continue working hard on making this therapy actually work for me in a way beyond merely accepting that the machine is doing its job.

And a PS to Rooster: I think it didn't occur to me to tell the OP about the data capabilities of his machine for two reasons: (1) The RT who set my machine up made a point of not only showing me how to access the efficacy data available on the S9's LCD, but also had me run through the button presses needed to access the detailed Sleep Quality report in her presence; I tend to forget that most folks don't run into an RT like that, and (2) the long and drawn out battle I've had with CPAP-induced insomnia makes me pick up on and respond to possible insomnia-flags in posts by newbies with adjustment problems.

[NightMonkey]

Data???? What is your data showing? Apneas, hypopneas, mask leak, snores???

Good question. How do I get that from my machine?

Try this: http://www.resmed.com/au/assets/documen ... ow_eng.pdf

Maybe some of the Resmed users will post other help.

I see that plenty of well-meaning people here gave you reassurance, but nobody told you how to check your data to see if your therapy is working worth a damn.

Reassurance, schmee-assurance, help him with his data and leave that nonsense until all his settings are optimized.

(Edited to remove four-letter word.)

OMG! When I first lurked here shortly after starting CPAP and having lots of problems, my attention was quickly drawn to a thread where experienced members were telling a noob about "data-capable" machines.

I was like, "WTF?!?! They have software that will measure apneas at night and the software works with your own machine at home!?!? WTH did none of the many people I talked to at the sleep lab, the doctor's office, and the DME tell me about this!?!?!"

Dude, it was calling the doc's office the next morning and asking them WTH was going on and what other secrets were they hiding. It took another visit to the office and a heated discussion with the PA, but I got that prescription for the machine and the software. Then I saw in black and white why I felt like crap. A couple weeks later with a little tweaking of the machine settings, switching to a FFM, and working out the leaks and I started to feel well.

The fluff would have never made me feel better. I needed to know about DATA!

Please tell these noobs right up front about DATA! That is a priority and the fluff can come later after they see DATA.