ready to give up

Dave, in case you're as muddleheaded as I was in the beginning: insist they upgrade the Escape to an S8 Elite II...DO NOT ALLOW THEM TO TELL YOU THEY CAN'T OR YOUR INSURANCE WON'T PAY FOR IT. The supplier bills the same insurance code and get reimbursed the same rate for the cheap Escape or the full-data reporting Elite which costs them more thus they make less profit each time a customer insists on the Elite. The Escape is dumb and only reports how many hrs it was on overnight, it tells you nothing about the effectiveness of your therapy -- I know I was too muddleheaded to know I had choices and got stuck with an Escape and I regret it!

Because I don't have data to watch for trends, I had a 6-month backslide with many of apnea symptoms returning...what a mess! I thought I was having continuing side effects from a drug I'd stopped taking, then I thought I had a cardiac condition spending lots to rule that out. By the time I finally found this site and the others suggested what might be happening, I'd lost a lot of the previous 17 months of 100% compliant therapy. I had to call my doc and get a loaner machine and get data...took wks to get straightened out; if I'd had the data, I'd have seen the leak and increased events back in the beginning and could have taken action then.

Don't get me wrong, the Escape reliably blows pressurized air...but tells me nothing about how many events I had or if I had leaks in my overnight sleep. Keeping the Escape is a huge mistake...don't do it!!!

I have dealt with my own discouragement, frustration, and exhaustion, but here's one big thing I found that helps:

(1) experiment with your cpap and mask when you are not completely dead-tired. When is that you might ask? Well, for me it might be on a Saturday or Sunday afternoon. I found that trying to set up my machine, adjust my mask, get used to falling asleep with the mask, etc... was way too much to ask of myself at the moment when I am ready to collapse into bed. So, I started by practicing setting up the machine and using the mask during the day when I am off from work. This way when I do use it in the evening, I already know the in's and out's of the mask and how to adjust it so it doesn't leak.

(2) if the above day-time practice routine is not an option, then start getting yourself ready for bed and putting on the mask about 2 hours before bed. For me, if I went to bed at 9pm, I would literally start getting everything ready at 7pm, so that I wasn't trying to do things when I was ready to collapse from exhaustion at 9pm.

Now, the mask and machine are not foreign to me, and I just need to start about 45 minutes in terms of start time. I assume with time that will get down to about 10 - 15 minutes at some point. (I am struggling with a different issue which is around trying to get my doc to prescribe a bi-level machine - that's a whole different story.) I can't believe the progress I have made so far, because there was a time when everything seemed about the machine and mask felt so odd and uncomfortable that I could not imagine things being different, or that they would ever feel close to 2nd nature.

Keep going, it really is about breaking it down into small steps, and a whole lot of practice and experimenting until you get it right.

Lastly, I found it helpful to make "appointments" with myself about when I would practice and experiment with the machine and mask. I have found it useful to take a "nothing, absolutely nothing except a true emergency is going to make me break this appointment I have with myself to practice and experiment with my cpap."

But really, try the machine and mask during the day when you are not as bone-dead tired as you probably are in the evening. I know you are probably sleepy during the day too - so you might do what I did as well, is make some of those practice times during the weekend at 11am. I would get up at 9am, do some chores, and then have my "cpap appointment/practice time" at 11am, just because I knew I would have SOME bit of energy then. It helped a lot with figuring out the mask leak part and experimenting with various pressures just to get used to what they felt like so that I might be able to fall asleep in the evening.

I hope some of that helps. Please keep us posted! We want you to succeed.

"Ready to give up" is a place many of us have been. I actually did quit, but my fear of sleeping without it was stronger than my dread of sleeping with it, so I started back again with the support of people on this forum. For a while it didn't look like I could ever make this work, but somehow I believed those who told me I could and I kept plugging away. I went from utter discouragement to a hope born out of desperation. Every night I went to bed fully expecting it to be the night I would sleep better and longer. I never stopped expecting it to happen, because I'd read the stories of so many who had made this journey and who were willing to walk me thru it. And hey, they were right, I could and did make this work for me. I hope you are able to change your perspective from "I can't do this" to "Tomorrow's another night". I'm not asking you to be willing to be in misery for the rest of your life - just for each one more night, just in case it's the night things turn around for you.

Oh, your machine should have a label on it with the provider's contact information.

Kathy

As you can see from the replies, this is hard work and it is devilishly hard to figure out when one is sleep deprived. But the other message woven through the replies is that YOU CAN DO THIS! Many of us have been where you are and you will be walked through your problems on this forum if you hang in there. I have just a couple of additional suggestions.

1. Your machine has a ramp. Figure out how to activate that ramp. When you awaken in the night with a "blow out" it may help to hit the ramp to reduce the pressure while you re-position your mask and try to go back to sleep.

2. Your machine has EPR (Expiratory Pressure Relief). Experiment with it to find what level is most comfortable for you to exhale against.

I know you are exhausted, but focus on your machine and mask and experiment with both to find the adjustments that work. Maybe you have a family member or friend who can help you decipher the instructions and help you make a plan to get your needs met from your Durable Medical Equipment provider who issued the machine and mask to you.

Be as specific as possible in posting questions on this forum. The more detail you give, the better people here can assist. Hang in there.

My CPAP machine has a ramp on it.

I often have to hit the button to ramp it back down to the lower air pressure setting. When the pressure is lower, you are able to move to a comfortable, non-air hissing position, and get to sleep before the air pressure causes the mask to leak.

Also, you really need to clean your mask and wash your face to reduce the slippage you are getting. The cleaner and drier your face mask is, the better it stays put and lessens the leakage.

I've had a CPAP machine for about 6 years. I hated it at first and I know many people who have quit for one reason or another.

I was falling asleep driving and at my desk at work. I slept weekends and evenings just so I could work 8 hours.

I'd never be without my CPAP machine now.

When I get sick and can't breathe from my nose, it is hard to use the CPAP machine and sometimes I have nights when I don't have it on initially but at some point, because I'm waking up constantly, I put the mask back on and try to sleep.

Sleeping with the CPAP machine is better than living without it. I'm very grateful for the technology.

Hope this helps.

Just do it---there are stories of how so many people on this site have struggled with compliance. It isn''t the easiest thing in the world, but it is far easier than dealing with the consequences of not doing it. Unfortunately, we come from a society of "instant gratification--" if it doesn't work in one day, people give up on something. You have to be persistent, consistent, and dedicated to making your health better. Read the stories that people have posted here, and hang in there.

tattooyu wrote:It takes a LOT of practice to adjust to your therapy
Obstacles (like leaks) will SEEM insurmountable

After sticking with it, you'll look back fondly at that time
When you were tearing out your hair
Feeling almost WORSE than before.

(I am BECOMING Carbonman!)

CPAP is a journey
Each and every day is an opportunity to feel better
If you have a bad night
Try and isolate if there were any changes from the night before
Make adjustments and try something else
One day at a time
Stick With It

Must be contagious... C-man-itis