Starting xPAP Theory - Worse before it gets Better?

So yeah, some of you may have seen my story under "Period Breathing - Non-Vented Mask" thread in here, but i wanted to start a new thread about this subject because i wanted to get some feedback on all CPAP users... hopefully this can help other users as well as me.

So, I just spent my 3rd night in xPAP land and i have to say i'm feeling worse and worse each day. I wanted to find out from everyone, when you started your xPAP therapy, were you:

A. Instantly Gratified and only got better each night
B. Same for awhile but gradually got better over time
C. Worse for awhile but eventually got better
D. Worse and never got better.....


Well, i can say i'm atleast in the C category with high hopes. I'm actually using an Adapt SV machine w/ a NOn-Vented mask, so i'm sure my situation is a bit different, but this is my 3rd trial w/ xPAP therapy (1st was 6 years ago w/ straight CPAP and i didnt give it a real effort, 2nd was 4 years ago w/ APAP and tried like heck for a month and never felt better) and, although it's only been 3 days into this therapy, i'm starting to really worry.

It's to the point now where i dont think i can handle another night like last and the poor sleep i was getting is better than the horrific sleep i've gotten the past 3 nights....


So, i wanted to get your opinions. I know there will be a lot of "Hang in there's" and "it takes time to adjusts", but i wanted to find out just how your experiences started... if it took awhile for one way or the other, how long would you say?


Ok, that's all...thanks for replying and i hope everyone had a great weekend!

I am sorry you are having problems. Since you have a non-vented mask, I would INSIST your DME provide a pulse oximeter. If they need to contact your doctor, let them do so. So, my suggestion is to NOT hang in there. If you feel worse, let it be a sign that you need to take action. (After all, its possible with all the hardware attached it increased CO2 retention).

I was much worse for my first year and then I got the Respironics Auto SV a little over a year ago. Gradually I've gotten somewhat better, but certainly no where near good. I still have a terrible time waking up with the alarm (3 of them) blasting and still it takes half an hour to wake up enough to sit up and turn them off. I don't feel as though I will fall asleep at a traffic light any more, so that is an improvement. I haven't had to sit through a boring lecture in over a year, so I don't know if I could take that now, or not.

I still find myself sitting for hours reading this forum, instead of doing the things I should be doing. I don't know if I'm still looking for that clue that might make me feel less tired, or if it is an addiction.

Bev

OutaSync wrote:... I still find myself sitting for hours reading this forum, instead of doing the things I should be doing. I don't know if I'm still looking for that clue that might make me feel less tired, or if it is an addiction. ...

It couldn't be an addiction, says the guy who just spent hours in front of his computer doing exactly the same thing and thinking that he was doing this "instead of doing the things I should be doing". Nope. It can't be an addition!

John,

Even though I have only met 4 of our members in person, all of you feel like my extended family. I certainly know more about some of you than I know about my own siblings. Waaay more! So, let's say that I'm not addicted, just checking up on my family.

Bev

I agree with John about a need for a pulse oximeter.

It was worse for me before it got better. As a matter of fact, 3 weeks in it was so much worse that I called the clinic and said I am stopping till I spoke to a doctor. As a result of the meeting with the docort I got swithced to a different RT, the pressure was moved to auto, another type of mask was tried -- and things got gradually better.

O.

Good idea of Johns to get the oximeter. The CMS 50e has alarms for both spo2 and pulse and would at least alleviate your "dark" thoughts knowing that you were alerted to those events. If you can afford it it may provide a little piece of mind. $120 from http://www.echostore.com/wireless-oximeter-cms50e.html and $130 from http://www.semedicalsupply.com/cms-50e.htm.

Don't be shy to tell your docs and DME how you are doing. I'm sure they have their reasons to have you on both the SV and non vented mask though, in my very limited and humble opinion, the SV alone should be sufficient. It has been known that DME's failed to setup equipment correctly so give them a call.

So, "hang in there!"

Deon

P.s. If you could, maybe you can post pics of your mask/adapter setup. I would really like to see it.

Good advice, i'll be talking with the Doc and DME Tech tomorrow to make sure i get that extra piece of tubing i need, the Data Card they didnt provide me, and i'll ask them about getting an Oximeter.

Although, the $3000 that they're billing my insurance co only comes with the "initial setup" stuff (Machine, Mask, Humidifier, Tubing, etc), and so i doubt they'll just hook me up, and i'm probably looking at purchasing one.

While i'm not sure it'll show anything (Because through all of my studies i never had much o2 desaturation) but you're right, with this non-vented ordeal it does make sense and at the very least, would help w/ getting some peace of mind, because the machine doesnt do it...

i'll get some pics of the mask setup soon.. too tired/lazy to do it..haha..

ugh.

no hose tonight... i need some semblence of sleep before i go after it again...

thanks for the kind words and sharing your stories..always appreciated...and much needed!

I uploaded a pic of my mask setup for you to see in my other thread... this definitely does not help the situation..lol

Here's the link: viewtopic.php?f=1&t=48554&p=451316#p451316

Thanks!

Well, to answer your original question, it would be C.

I was either lucky or had a good sleep therapist, it all went almost exactly as she said it would. The first 3 days were quite a bit worse, couldn't get out of bed as before, went in to work a couple hours late because I just couldn't get up. I stuck with it. Then it started getting better and I started dreaming again.

It got better over the next month or so and now after about 3 1/2 months it is a big improvement over what it was pre treatment.

One thing to keep in mind, which I learned on forums about motorcycles, is that generally people who have no problems at all do not have the need to find a place like this. In our cases, since our health is involved, it pays to find out more info even if things are going good. That was why I did some searching and found this forum. Also, as with the motorcycle forums, you will find that the experienced people here probably know more through research, trial and error and adjustment than the so called experts who haven't lived it.

Best wishes. Don't give up, if it isn't improving you may need to adjust your treatment until you find what works for you.

James