Can someone please help me?

PMG · Post by **PMG** » Mon Mar 10, 2008 6:39 am

Hello Everyone, I am not newly diagnosed with OSA , I was diagnosed with it about 5 years ago but I was never able to sleep very well at the sleep center so I was only tiatred to 11, and at that point it still wasn't enough but I slept with that for about 2 years, then went up to 12 for the past 2 years. These pressure settings were never enough, I would wake up feeling ok but about 2 hours later I would feel so tired that I would just have to close my eyes for a bit. I did try to go for 2 other sleep studys in the past 2 years and just couldn't fall asleep! So my sleep doctor raised my pressure from 12 to 14 about 2 months ago, didn't really see a difference, I was still tired and on top of that I started having palpatations after waking up in the morning and sometimes even at night. So I tell me sleep doc this and he tells me we can turn it back to 12 again, Well that doesn't solve my problem seeing that 12 is probably to low. So I finally found this web site and found out about the auot cpap with a-flex, I tell me sleep doc and he agrees to send a script to my dme. So here is my dilamea, I have used the machine which is set at 5-20, the a-fex ia at 2 and the humidifer is at 1, which still makes me congested for 3 nights and the first 2 nights weren't that great but last night I woke up every hour and half to go to the bathroom I mean I went to the bathroom 3 times in 6 hours! I maybe got up 1 time with my old straight cpap machine, I hardly got any sleep. I think my doctor wanted to see the smartcard after 2 weeks of treatment but I can't sleep like this every night. Is there also a way I could put the machine on strait cpap to see how that works for me and does the smartcard give you data on straight cpap? I'm sorry this is so long but I'm very frustrated at this point and I know everyone here has great knowledge and are so helpful!

Thank you again,
Patty

Nodzy · Post by **Nodzy** » Mon Mar 10, 2008 7:06 am

PMG,
Yes, you can put the machine on staight CPAP by going into provider setup on the machine.

But before doing that you should write down every every word of every current setting in case you need to go back to that what it's set-up for now.

The going to the bathroom problem: If you suffer edema and metabolism malfunctions, which OSA are known to cause among many other problems, the APAP could be what you needed to get edema fluid out much better. I know that's what occurred with me. But the nightly bathroom runs tapered off as I stabilized in good therapy and regained some normalization of body functions.

The pressures: The low-end pressure is set too low. You were at 12cm-H2O and 14cm-H2O before on CPAP. Now they have you set at a 5cm-H2O to 20cm-H2O range. Check the LCD screen on the machine by pressing the "right" arrow, and find out what your 90% pressure is. I'd bet it's somewhere between 11cm-H2O and 15cm-H20.

Do you have Encore Viewer software, or Encore Pro to read your own data?

Too, making settings changes too often can confuse the issues, and your body-&-brain. They body-brain combo has to acclimate to the therpay at whatever range and change(s) before you can tell a whole lot about what's going on. That can take a week to three. Two is about average for most people to stabilize at a given settings set.

And... nights change... how the therpay works for you when no changes are made. As you're probably well aware.

PM me by using the "PM Me!" link at the bottom of the my post, and I'll work with you.

Nodzy

LavenderMist · Post by **LavenderMist** » Mon Mar 10, 2008 7:09 am

Yes, the auto will give data set on straight cpap. That is how I have mine set now. However, the dr is trying to find your correct pressure with the auto mode. You may want to consider asking the dr to change the range on the auto. If you've been using a pressure of 12 then the bottom pressure of 5 is too low. I know I'd feel like I was suffocating on 5. Also, the auto has a lot of pressure ground to cover to get up to the range where it needs to be to get to your apneas. The main thing with getting titrated with the auto too is making sure your leaks are eliminated. If you are leaking with your mask or worse mouthbreathing then the machine will chase leaks all night and keep driving the pressure up. So, that is critical to coming up with an accurate pressure for you. If it were me, I'd make sure my leaks were under control and bump that bottom pressure up to closer to the pressure you've been running at to say like 10-20. If leaks are under control it won't go higher than you need, but should be close enough to where you need to be to get there in time to help with events you have.

Good luck!
Mist

ozij · Post by **ozij** » Mon Mar 10, 2008 7:52 am

Patty,
I realize how annoying and depressing the must be, and a quick solution would be great.
And I agree that an emergency measure will be raising the bottom pressure. I'ld prbably try about 10 or more, just to see if this helps.

I would also serously consider limiting the top of the range to 14 at most. Your bad response to higher pressure (14) makes me wonder if you are not getting pressure induced apneas -- that happens to some of us: In those cases, our brains intructs our body to stop breathing, because it interprets the streched lungs as "OK, enough already". These are not obstructive apneas - but they can be just as disruptive to your sleep. If you're getting pressure induced apneas - NRAH on the software report, chances are that pressure higher than 14 is not what you need. (The machine may be driven to give you higher pressure by snores for instance). That would be my emergency response.

But, since your problem has been going on for 5 years, maybe you can now use the machine to figure out gradually and patiently what is going on, and what pressure you may need.

Here's how I would go about it systematically, maybe you can suggest something like this to the docotor..

I would buy the software to read my data on my own computer.
I'ld start my search for the right pressure by trying to understand what was happening at my present pressure.

Which is why for the first week, I'ld set the machine at my fixed pressure. I'ld do it by setting it on APAP (automatic) with the bottom pressure equivalent to the top. That will give the software all the data you get in APAP mode, and will give you fixed pressure. The software will also indicate how good your seal, or how bad your leaks.

I would then try an 10-13 range, see the data and see how I felt. I would do that for a week as well.

How to continue will depend very much on the data.

Do you know if you mouthbreathe? Are you aware that opening your mouth when you sleep and having air pour out can counteract your therapy?

A possible conclusion at the end of your APAP trial period may be that you need bi-level therapy, with a big difference between the necessary inhale pressure, and exhale pressure.

We'll be wiser when you have the data.

O.

rested gal · Post by **rested gal** » Mon Mar 10, 2008 8:19 am

Patty,

I'd do a Google search for "Encore Viewer" and shop around at internet stores for prices on the software and card reader.

If a person doesn't mind waiting a week or two, the cheapest place I've seen for buying the necessary card reader is at two-factor.com. It's this card reader (about $31 including shipping):
http://www.two-factor.com/shop/index.php?productID=115

But in your case you need to start looking at the full details information from your Smart Card now. Especially to check for leaks. So, you might want to look for the best price on the software bundle (software and card reader together.)

If you find a cheaper price than what cpap.com sells it for, call cpap.com. They will price match.

I'd definitely raise the lower pressure in the range to 10, if it were me.

What is the full name of your machine, as written on top of the machine? You mentioned "a-flex", but I want to be sure that's the machine you have, and not an older M Auto. Does your machine have all of these words on top?

Respironics REMstar Auto|A-Flex M series

If you'll PM me your email address, I'll send you the Provider Setup Guide for your machine.

Wulfman · Post by **Wulfman** » Mon Mar 10, 2008 9:31 am

If you were leaking your therapy air out your mouth all those years, THAT would account for your not feeling any improvement. And, if you still continue to do that, the most expensive, fancy-schmancy machine won't help either.
But, at least with a data capable machine AND the software, you'll know if you're mouth-leaking.

Den

PMG · Post by **PMG** » Mon Mar 10, 2008 9:47 am

Thanks everyone for your replies, I knew I could count on your wonderful knowledge. I've had a regular cpap machine for almost 5 years and never knew until I found this site that some machines have the capability of recording apneas and all the other stuff. And with the leaks from the mask, I do have my mask pretty tight and a chin strap that's equally tight but I've gotten used to having it that way but yes I could still be mouth breathing and have leaks. I hopping this smartcard will be able to give some clue on what I'm doing at night!

Again thank you all for your help,
Patty