Please help, CPAP problems 5 months in

[BlueSky72]

I am a 30-something female with severe sleep apnea. I have mostly OSA with some centrals that are medication-caused. I'm overweight, and have a few other conditions. I have been using CPAP for 5 months, with only the last 2 months at a sufficiently high pressure, 17.5cm.

A few weeks ago I switched from a Resmed S8 machine to a Respironics Pro M Series machine, which I am finding much better... because the C-Flex algorithm seems to better maintain the pressure than the EPR algorithm did (but I can't prove this or reference it, it's just my impression). At the start, the Respironics machine was performing great for me, with my Comfortgel nasal mask. But to give myself a bit more leeway with nasal congestion, I have been using my Quattro FF mask. This is not going well - my leak rate has gone sky high (about 0.40 - 0.80 compared to 0.02 - 0.08). The machine is reporting an AHI of about 5-6 - but of course I can't trust that because of the leak rate. I "feel" like my AHI is more like 25, as I am fatigued, sleepy, at times headachy, and I always have low energy... I am almost back to a pre-CPAP level of symptoms!

I am trying to use a FF mask because at the moment I experience too much mouth breathing with a nasal mask. I am using CPAP instead of Bi-Level because I can't afford a Bi-Level. I am uninsured because I lost my job due to undiagnosed sleep apnea. I rent my CPAP machine at a pretty good rate. I have reluctantly decided to tolerate this second-best solution for now, and when I get well enough, I can work, and save up for the proper treatment. To give you an idea of the cost of a Resmed VPAP 25 ASV where I live, it's the same amount of money you could use for a house deposit, a late model car, or a round the world trip. So, I am focussed on doing the best I can with CPAP for now.

I have some specific questions for the good people of cpaptalk.com:

1. Do others have success with the Quattro at a higher pressure like 17cm? Any tips for me? Any other masks that work better at high pressures?

2. With the Remstar Pro M Series, how do you get the daily screen-reported data to record consistently? Some days it records nothing at all, other days it records for only 30-60 minutes. It's baffling! There's nothing in the manual about it, that I can see. (I am clearing the history each day).

3. How does a patient go about getting the Encore software?

4. Would I get better results if I reduced the C-Flex level to 2, or 1? (I don't really want to, but if it will help...)

5. What about increasing the pressure to 18cm? (I know I need my data problems solved first though)

Any help on one or more of these questions would be terrific, folks. And I'm open to any other comments or questions you have. Thanks so much for your help.

[jules]

leak rates on resmed machines are recorded and reported differently than leak rates on respironics m series (not just nightly vs weekly averages but more)

what are the actual LED numbers

[BlueSky72]

The main way I know there is massive leak is the way I feel when I wake up. Do the actual numbers make that much of a difference? I can't remember today's, I've deleted them already. They're just always bad.

[jules]

just you can't say they are the same scale even - it is like temperatures - we tend to use F here, most of the world uses C - the numbers are comparable - got to convert - same with the leak rates

you need to solve leak issue before you do much more - start keeping a log of the numbers and get the software



encore viewer (or encore pro) is the software needed - cpap.com sells encore viewer - you need the right card reader too a mako DT 3500 - they sell that also - you have PC not a Mac ? lots of posts on where to get the software and the card reader if you search the forum -

[BlueSky72]

Jules, there's not much point in me keeping a log of the data when it's being inconsistently reported eg no data some days, incomplete data on other days. I need to fix that problem first. I'm hoping that I'm not the first person to have ever struck this problem with this machine. As I said, I have had no joy from the manual, which is pretty limited actually.

Unfortunately I do not have the manual readily to hand, or I'd quote the threshold it gives, that you are supposed to be under. I know the leak is 1-2 times more than that threshold - that's what I mean by saying it's so far above the acceptable level it doesn't matter. It's not like the difference between fahrenheit and celcius - both manufacturers' machines use litres per second or litres per minute (from memory). I have read the manual for every machine or mask I have used.

I can even hear the mask leaking - it wakes me up. If you've ever used a Quattro then you'll know they can be tricky. I found a Quattro fine at lower pressures but this is the first time I've tried to use it at a high pressure. So, I'm especially looking for advice on this mask or on FF masks at higher pressures.

Even if I had the money to buy the software right now, it would take about 2 weeks to get here. I simply cannot go on for 2 more weeks feeling the way I feel. I'm trying to find some solutions as quickly as possible. I know I will need the software eventually - my DME said I'm not allowed to have it. Presumably Respironics has banned it's sale to patients? That's why I would like to know a bit more about the situation. But it's not as urgent a need for me as the mask leaks and strange reporting issue of tha machine. That affects me every night and every day

[jules]

the log is better than no log

the m series machines are known to skip nights of data - many here have reported that

the values for leaks on the mask paperwork are given in l/min usually

the respironics machine reports leaks in l/min

the resmed machines report leaks in l/sec in excess of the mask in the menu

the card reader for the respironics machine is not any old card reader - the driver can be found online but if you want the software and reader, you will need to order the card reader from somewhere

you didn't say what part of the world you are in - there is a vendor in hong kong a few have used as well as some US vendors for the card reader - as far as the rest of the planet, I don't know

[BlueSky72]

the m series machines are known to skip nights of data - many here have reported that

right, now we are getting somewhere...

[jules]

the LED data for the m series is full of errors too - better than nothing but not a lot better - hence you need to get the software

I am sure someone will come along and try to answer all your questions - I tend to concentrate on leak issues a lot when all the person has is LED data


viewtopic.php?p=207610#p207610 is one thread about missing data I recall -

[BlueSky72]

Thanks for the link to the thread - I see that data problems affect the software as much as they affect the LED. I'm not sure I want to buy software that's only sporadically useful, but I've got enough time to mull it over. I'll do a search for threads that can help me decide whether the therapy gains of Respironics are worth sacrificing the data for.

[MaryC]

Hi Bluesky72

I am uninsured because I lost my job due to undiagnosed sleep apnea.

I am getting OT, so I apologize in advance.

I am sorry this happened to you. I am pretty severe myself and have felt terrible for the most part for years now. I have been able to keep my job (mostly computer related) but sometimes I have wondered how I continue to go feeling tired all the time and cranky. I cannot even keep up with housework and organizing my important papers.

I hope you get back on your feet soon and find work in this tough economy. I am very sorry, but I am glad you did not die from this condition as it appears many have "died in their sleep" and you wonder how much of those are sleep deprived related.

I really wish you get better, and I hope to as well. I am new to CPAP myself (just got my machine about 3 weeks ago and am still adjusting).

[BlueSky72]

Just bumping up the thread - if anyone has some thoughts on all this please let me know.

Last night's "data" according to the LED:

Usage time (apparently): 0:54 h (that's, oh, about 8 hours out)
Leak rate: 44.6 LPM
AHI: 6.7 p/h

I don't know whether I can trust the leak rate or AHI, but there they are. My main problem is getting the Quattro to fit correctly with minimal leak. Followed by the other questions I listed in my original post. I know I can't fix the issue of missing data, but can anyone tell me if the issue with usage time is fixable?

Thanks again for any help that people can offer.

[dsm]

Hi BlueSky72

I have a similar config re quattro but am lucky enough to be on a low 13 CMs even though my machine regularly goes up to 17 CMs.
I was having a few problems due to this as my leak rates were often very high & when that happened therapy took a nosedive.

As of late though I seem to be getting by well. I can't really say for sure what improved but I did tighten the mask a bit more than I normally have it.

I do suspect that those of us who have a few years of cpap use, have learned to move our heads & faces to correct leaks & manage to do it without any serious waking up. This is just my thoughts as I have no real proofs.

When I did a lot of tests on this I was pretty sure that 15-16 CMs was the point where masks tend to play up. By this I mean it gets harder to manage leaks.

The bridge adjustment on the quattro seems to be better than what I had on my UMFF mask & for me the quattro is the better mask.

Good luck

DSM

[BlueSky72]

I think you're right DSM, it is at about 15-16cms that any tendency towards leak tends to appear in a mask. I seem to do great when my nose is clear enough to use a nasal mask, but a FF mask just adds a whole layer of compexity, doesn't it. More contact area, more leak opportunities. Mine leaks at the bottom corners.

Ok I'll focus on getting the Quattro carefully tightened as much as I can without deflating it.
And getting my nose clear if I can, to let me use a nasal mask.

[Sleepy Boy]

Hi BlueSky: I also have the Quattro, mine also leaks at the corners, especially the left. The only way I can help the leaks, is to leave in my dentures, but that doesn't stop the leaks. If I can get to sleep before the leaks start, I will sleep a while before the leaks wake me up. My pressure is 13cm, I use the cflex on 2-3. Everyone seems to like the Quattro, but I've been fighting it for 2 months. They say it's all in the adjustment, but I tried it loose, tight, and everywhere in between with no luck. Sorry, I'm sure that's not what you wanted to hear, that's my experience with it.

[OutaSync]

Just bumping up the thread - if anyone has some thoughts on all this please let me know.

Last night's "data" according to the LED:

Usage time (apparently): 0:54 h (that's, oh, about 8 hours out)
Leak rate: 44.6 LPM
AHI: 6.7 p/h

I don't know whether I can trust the leak rate or AHI, but there they are. My main problem is getting the Quattro to fit correctly with minimal leak. Followed by the other questions I listed in my original post. I know I can't fix the issue of missing data, but can anyone tell me if the issue with usage time is fixable?

Thanks again for any help that people can offer.

According to the leak chart that came with my Quattro, with a pressure of 16 your exhaust rate should be 48. anything above that would be counted as a leak. For a pressure of 20, your exhaust rate should be 54. So, if your leak rate is 44.6 at a pressure of 17, you aren't having more leaks than is expected for that mask.

Have you tired tying a stretchy strap around your head and the mask to help hold it in place when the pressures go up? A piece of pantyhose or sweatband or something like that? Personally, I've had absolutely no luck with any of the Quattros and I have tried the Xsmall, small, med and large. They all leak so much that I cannot even get to sleep. I feel for you. I can't find a full face that works for me, either. As long as I have one nostril clear enough to get some air in, I figure I won't die in my sleep. Funny thing is, if I go to sleep with the left side closed, I wake up with that one open and the right side closed. At some pint in the night I must have had both open or both closed

Hang in there, girl.

Bev