I must be one of the 20%

[newname]

In another post I read that 20% don't respond to cpap. Must be me. It'll be 5 years in January of faithfully using the machine every night. I even have a fairly comfortable mask-Activa LT. I fall asleep during the day if I sit down or if I'm out I have to go home because I get so tired. I've had many tests and they came back normal. Maybe I have the wrong machine for me. When I go to a sleep study, they only use one machine for everyone, so how do they know its the right one for each person? Can they tell if someone needs a bipap or autopap? I'm so tired. I only sleep about 2 or 3 hours, wake up, sleep a little more and finally get up. I crave sleeping a straight 7 or 8 hours, but it doesn't happen. Once I slept 9 hours but that was only after not sleeping the night before.
What would be a good machine to get in January? Mine is a borrowed Legacy.

[archangle]

I'd say to get a Philips Respironics System One Auto or a ResMed S9 Autoset. They both collect good data. If you don't want the auto function, you can turn it off and use manual CPAP if that's what you want.

Right now, the software is more readily available for the PRS1 machine. There is even open source software to read the data. Learn to use the software and check your results.

You can still buy a card reader and software for your legacy REMstar auto machine, although there are problems installing it on a 64 bit Windows machine.

If you need a Bilevel machine, you will need a different machine.

I'm not sure exactly what causes them to prescribe a bilevel machine. I do know that most "CPAP" machines won't go above 20 cm pressure. I think that's a somewhat artificial distinction that is more for insurance reimbursement rates than for real therapuetic or mechanical reasons. Bilevel machines do a more extreme level of pressure reduction on exhale, but a lot of the CPAP machines do some sort of "flex" which is similar. I suspect this is another insurance artifact. Some of the bilevel machines get into things like controlling your breathing rate.

How is your machine set? Pressure range, auto, CFLEX? Have you tried different pressures?

[Emilia]

You clearly need a machine that provides you with good efficacy data in order to know what is happening overnight. You aren't getting good therapy if you are still sleepy all day long, but you have no way of knowing what the issues are without data.

There are several good, data capable machines you can choose from. Our host's site lists their best selling machines here, and the first three are the best ones to consider: https://www.cpap.com/cpap-machines/apap-machine.php

Each has software available and will provide you with excellent therapy.

If you can possibly get it before January, that would be even better for you...

[Julie]

Hi, it's too bad that you don't feel you've had any luck on Cpap, but I wonder if you've tried different masks in those years, because most of the time it's the mask, and not the machine, that causes problems.

Most machines, like yours, are very good and most are very alike, but if, for instance, you really need a 'full face' mask vs a nasal one because you sleep with your mouth open, losing the Cpap air that way and being effectively untreated, then you need to look into that possibility. As well, your pressure might not be suitable for you now, and might need tweaking as most of us do on our own rather than going through a whole new sleep study. And there are many other factors such as GERD (acid reflux) which can cause problems and need to be explored, so the more information you can come up with, from e.g. the time you exercise in relation to sleeping, or your diet, any medication, will be helpful for people to look at and give you suggestions.

[jnk]

. . . Right now, the software is more readily available for the PRS1 machine. . . .

Huh?

ResMed gladly GIVES AWAY its software for free over the Internet to any patient wishing to download it:

http://www.resmed.com/int/assets/html/s ... c=patients

[jnk]

. . . I'm not sure exactly what causes them to prescribe a bilevel machine. . . .

Well, one thing is not doing well on CPAP, and thus, in the medical terminology of the PAP gods, "failing CPAP"--as in, continuing to have symptoms despite "compliance," or "adherence," or whatever it is they call 'using the machine enough to make insurance happy' these days.

. . . a lot of the CPAP machines do some sort of "flex" which is similar. . . .

I do not consider Flex to be AT ALL similar to bilevel. ResMed's EPR is pretty close, though, in practice, if not completely in feel. It is, in that sense, a form of bilevel-like pressure reduction throughout exhale. But it only gives up to (or would that be "down to"?) 3 cm of differential between inhale pressure and exhale pressure. Standard differential is at least 4 cm for bilevel prescriptions. I suspect that difference may be a line in the sand for insurance, similar to what you say. But some people need more differential than 4 cm for conditions that occur alongside OSA, according to my understanding.

. . . How is your machine set? Pressure range, auto, CFLEX? Have you tried different pressures?

I agree that those are good questions to ask and to be answered.

Hope you don't mind me tossing in my 2 cents on that stuff, archangle.

[Wulfman...]

In another post I read that 20% don't respond to cpap. Must be me. It'll be 5 years in January of faithfully using the machine every night. I even have a fairly comfortable mask-Activa LT. I fall asleep during the day if I sit down or if I'm out I have to go home because I get so tired. I've had many tests and they came back normal. Maybe I have the wrong machine for me. When I go to a sleep study, they only use one machine for everyone, so how do they know its the right one for each person? Can they tell if someone needs a bipap or autopap? I'm so tired. I only sleep about 2 or 3 hours, wake up, sleep a little more and finally get up. I crave sleeping a straight 7 or 8 hours, but it doesn't happen. Once I slept 9 hours but that was only after not sleeping the night before.
What would be a good machine to get in January? Mine is a borrowed Legacy.

You've already got one of the best machines ever made. (You have the Legacy APAP in your profile)
What do you mean "borrowed"?
What have you been using all these years?
What are your machine settings?
Do you have software to monitor your therapy?
Are you sure you're not losing your therapy air out your mouth during the night?


Den

[WillCunningham]

I would also question how long it has been since you last got your pressure settings prescribed? If you have gained or lost weight since then I have heard that can affect your pressure needs. It seemed to be the case for me. I was prescribed 17 cm of pressure originally but have been doing much better at 21cm of pressure. That could be ascribed to gaining some weight, or perhaps sleeping in a different position then when they tested me like five and a half years ago.

If you have been at it for 5 years I do wonder if you might be having some mask leaks or perhaps breathing out your mouth or something. You might want to talk to another doctor too if you have not had improvement after 5 years of trying. I love my Activa LT mask and also find it comfortable on my face, the head gear irritates the back of my neck a bit but thanks to a suggestion from Rested Gal I have a padacheek neck guard on the way to hopefully resolve that. Anyway when I feel concerned I might be having leaks I tighten my mask up a bit to make sure that isn't the case. I have also found that replacing the mask's cushion makes it easier to get a good seal. I also check my hose for leaks, twice now I have had cracks in my hose leaking pressure and not realizing it for a while. I would double check where the machine and humidifier connect too, I once had that seal not aligned properly and leaked pressure out there too.

If it is not the mask leaking then I would really question if you have the right pressure setting. Wulfman mentioned your profile saying that your machine is an APAP. I would suggest putting the machine in apap mode for a while so it will auto-set your pressure. If it is currently in auto-pap mode then I would try putting it into straight cpap mode. I had trouble dealing with the changing pressures and felt more rested in normal cpap mode, but my experience seems to be the exception rather than the rule. If you can pull it off you would probably benefit from using the software to try and get a better idea if your sleep problems are pressure related.

With you only sleeping a few hours at a time, I wouldn't expect you to feel particularly rested. Could there be something non cpap related affecting your sleep? light, sounds, a cat jumping on your head, dog barking, acid reflux/heartburn, a bed partner who elbows you, or a train near your house, something like that? I am trying to think of some other things for you to try but I am drawn up blank. If you have access to an oximeter to monitor your bloods oxygen levels that might help you nail down that you are having apnea issues rather than environmental issues. Having someone watch you sleep or recording yourself sleeping might help you pinpoint why you wake up every few hours. Good luck!

[newname]

I can't get comfortable with a full face mask. I've tried so many masks I lost count. The ACtiva LT is comfortable for me. Iasked the sleep technician if I open my mouth and she said no, but I wonder about that. I know I talk in my sleep so my mouth is open for that. My mouth is dry in the morning. Maybe I will try the full face masks again to see.
I doubt a sleep study gives accurate results for me because I don't sleep much during the study. It makes me angry that just as I doze off the technician wakes me up to go home.

[archangle]

. . . Right now, the software is more readily available for the PRS1 machine. . . .

Huh?

ResMed gladly GIVES AWAY its software for free over the Internet to any patient wishing to download it:

http://www.resmed.com/int/assets/html/s ... c=patients

You're right about that. I was thinking about freeware Onkor and sleepyhead which don't do ResMed yet.

[robysue]

What would be a good machine to get in January? Mine is a borrowed Legacy.

First, what's a good machine? As others have said, you want a full efficacy data machine. The most common ones talked about around here are:

• the Resmed S9 AutoSet (NOT the Resmed S9 Auto Escape),
• the PR System One Auto with A-Flex,
• the Resmed S9 Elite CPAP (NOT the Resmed S9 Escape), and
• the PR System One PRO CPAP with C-Flex Plus (NOT the PR System One PLUS CPAP with C-flex).

But I also want to address this comment you make:

]I'm so tired. I only sleep about 2 or 3 hours, wake up, sleep a little more and finally get up. I crave sleeping a straight 7 or 8 hours, but it doesn't happen. Once I slept 9 hours but that was only after not sleeping the night before.

No wonder you are still tired all the time: It sounds like you've got a pretty nasy case of chronic sleep maintenance insomnia that's been going on for possibly as long as the five years you've been on CPAP.

How much sleep do you think you actually get each night? 4 hours? Of broken sleep? If that's the case, you're probably dealing with some severe sleep deprivation issues. And until the sleep maintenance insomnia is better under control, my guess is that you'll continue to not really feel the benefits the CPAP is providing you in terms of managing the apnea and it's associated desats and mini-arousals.

So---what kinds of things have you tied for attempting to get the insomnia under control? And have you talked to a doctor about it? If so, was it your sleep doc or your PCP? And what ideas did they suggest and did any of them even work marginally for you?

So---in addition to trying to determine whether your CPAP therapy is effective in terms of reduing your AHI to less than 5, you also need to have a chat with your doctor about a strategy for fighing the insomnia.

If you want plenty of tips for dealing with CPAP&Insomnia simultaneously, you might want to look at the Taming the Insomnia Monster link in my signature. It's written more for a newbie CPAPer who's dealing with significant insonmnia issues, but some of what I say may be applicable to your situation as well.

Good luck in finding a way out of the CPAP&Insomnia club---your five year membership has lasted far, far too long.