Please help, CPAP problems 5 months in

BlueSky72 wrote:I have mostly OSA with some centrals that are medication-caused.

BlueSky72, are you sure the central apneas are under control or negligible?

Sleepy Boy wrote: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.

I do want to hear both positive and negative experiences - we learn from both. I'm sorry you are having trouble with the Quattro. When I was on 13cm it still leaked, but it was ok - I was using a Resmed machine then and the leak rate was about 20, so it was acceptable. I found that a nasal mask worked much better than that so I switched. I then had a major allergies flare and had to switch back to the Quattro.

Just because everybody else likes it doesn't mean you should too. If you are able to try another FF mask, or a nasal mask, maybe give it a try. Even Resmed's 'research' says it will fit 95% of users - you could be in the 5%. There's a 1 in 20 chance. Although, I suspect the true figure is lower than 95%, because their research subjects are not representative of the xPAP user population. Put simply, many of us are overweight, and need higher pressures that the masks can't handle. I have heard that the distribution of body weights in the testing does not reflect that, so they can say the mask fits 95% of people. Sounds like a drug company doesn't it. If anyone reading this can prove me wrong, I'd be much happier to know this isn't true. (BTW, I don't think Respironics is any better: at least you can rely on a Resmed machine to give you data every night).

Hi Blue Sky: My DME guy just gave me a Fisher& Paykel, its' the Forma. I will try it for 2-3 days and see how it does. I used the Swift Light Nasal Pillows and really liked it. I'm a mouth breather, so had to use tape, polident strips, chin strap etc. so went to the Quattro. My DME guy said if this doesn't work, I'll be going back to a nasal mask. I was looking at the Mirage Activa Nasal, but hope this FFM from Fisher works, I hate the tape & glue. I sure hope you get things under control for yourself, its a pain to struggle with this stuff. Good Luck with it.. Larry..

OutaSync wrote: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

Thanks so much Bev - I should have checked that out. I'm so used to a Resmed that takes your mask setting into account before reporting leak. All I needed was someone to explain it to me like you have. I will try out some strap options. Hey, about the nostrils, I read in a research article recently that they go through a normal 'cleaning' cycle every few hours that closes one nostril and then the other. How about that. For me, if I am not getting enough air in through my nose, my mouth opens and it's all over. I have tried a chin strap - I had to take it off after 20 minutes because it hurt so much.

Anyway, last night I was so desperate for uninterrupted sleep that I went back to my nasal mask. I feel a lot better today and my mouth is not dry, so I reckon I kept it closed. I wish I could share some data, but it was one of those LED 0.0 nights thanks to Respironics! That happens about 3 nights a week. And when I do get LED data, it's never been more than 1.5 hours worth. I can't afford the software right now, and anyway I'm not sure I'm sticking with this machine when the software has a known missing data problem. I am waiting until I learn more about the efficacy of the machine first.

Thanks for your kind words, it really helps.
Bluesky

MaryC wrote: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).

Mary, I just saw your post, sorry for not responding earlier. Thank you very much for your supportive words. It's been hard at times knowing that if only I had been diagnosed while I still had insurance I could have a machine and masks for free, and additional sleep studies. I can't even sue for medical malpractice; there's no accountability. I just have to take a deep breath, and try to get a job in this economy and wait for the pre-existing conditions period to pass. In the meantime, I'll get the best goods and services I can for my out of pocket spending. Fortunately I can research my options and buy online - thank God for the internet!

I like to think I am too young to die in my sleep just yet, but maybe I would have. That mental exercise does help me stay positive. I did fall asleep at the wheel and had a minor prang - it could have been in the middle of traffic, so I am blessed. Sleep apnea is serious stuff.

Thanks again for your thoughtful words, they really help.

BlueSky72 wrote: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

Have you done the "Teflon tape fix" to your mask yet?

viewtopic.php?f=1&t=33452

Your DME is either a liar or an idiot....or both.
Respironics came out with Encore Viewer a couple of years ago.....for the USERS.

https://www.cpap.com/productpage-bundle.php?BundleID=64


Den

-SWS wrote:

BlueSky72 wrote:I have mostly OSA with some centrals that are medication-caused.

BlueSky72, are you sure the central apneas are under control or negligible?

SWS, I am sure they are neither. But I have no way of treating them, due to being uninsured. I will eventually pay for a BiLevel out of pocket, but that is a long way off. The centrals are probably at exactly the same level as they were in March and the first half of April when I did not have such a profound level of fatigue.

You raise a good point though... maybe I am having more centrals for some reason eg a new medication (I take so many it's hard to keep up) or being stressed and over-tired from doing too much (there is some personal / practical stuff going on in my life). What I want is solid enough therapy that it can take these things... or at the very least, I machine that gives me reliable data so I can fix it myself. As long as my CPAP therapy is as optimal as it can be, then somehow it makes it easier to tolerate not having a BilLevel yet.

Bluesky,

It's been a long time since I had to depend on getting my data from the screen, but it seems to me as though there was something about having to wait until after 12 noon before the data would show up. I could be wrong, but I don't think you can check it right after you turn off your machine.

Can someone help her out with this? My memory is shot.

Bev

BlueSky72 wrote:

-SWS wrote:

BlueSky72 wrote:I have mostly OSA with some centrals that are medication-caused.

BlueSky72, are you sure the central apneas are under control or negligible?

SWS, I am sure they are neither. But I have no way of treating them, due to being uninsured. I will eventually pay for a BiLevel out of pocket, but that is a long way off. The centrals are probably at exactly the same level as they were in March and the first half of April when I did not have such a profound level of fatigue.

You raise a good point though... maybe I am having more centrals for some reason eg a new medication (I take so many it's hard to keep up) or being stressed and over-tired from doing too much (there is some personal / practical stuff going on in my life). What I want is solid enough therapy that it can take these things... or at the very least, I machine that gives me reliable data so I can fix it myself. As long as my CPAP therapy is as optimal as it can be, then somehow it makes it easier to tolerate not having a BilLevel yet.

BlueSky72, I agree with your strategy of addressing all those issues you mentioned.

But do you perchance remember how many/few central apneas they scored during your sleep study? Central apneas can sometimes be episodic---occurring in fits and spurts from one night to the next.

I'd recommend first attempting to optimize CPAP treatment the way you are. If for some reason things don't seem right after that, then I'd suggest revisiting whether central dysregulation perhaps plays a more prominent if not episodic role. Good luck!

I wait about 2 hours to check my LCD screen. I don't have a card reader either. I think Den can tell you exactly how long it takes. Sleepy Boy...

Hi,

Yes, I've noticed problems with the Mirage Quatro FF with higher pressure. I've the Respironics Mstar CPAP Auto with Cflex. I found the setup sheet on the Internet and set the machine, temporarily, to just CPAP at 15 Cm H2o with no ramp, fit the mask at that pressure! Then set the machine back to it's CPAP Auto setting with 15 Cm max and a Cflex of 2. It is somewhat tight and uncomfortable, but it didn't leak for 4 nights in a row! The fifth night it leaked like a bandit, squealing like a tribe of Banshees. I found that an undiagnosed problem with flesh swelling and getting hard as wood and then loosing the tone, becoming flabby was also affecting my face and the tape measure length around my head where the head gear goes. It was varying over an inch and a half. Sometimes getting tighter at night, some times getting looser. Once it gets looser, the softer silicone layer gets inverted, that is the curve curves to the outside rather than inside under higher pressure. No amount of tightening makes it stop. Turning the machine off and readjusting the mask would work if it came on blowing at 15 Cm, but it doesn't, so, when it revs up to high pressure again, it leaks and screams again. In fact, my first Quatro, a small size, actually blew up like a balloon and exploded, tearing the silicone all the way up the piece over my nose. I'm using a medium one now and have myself trained to wake up and shut down before the leak screaming gets too bad. Also, I've noticed, that some of the rev up seems to be caused by bedclothes being up over the exhaust, in fact I'm sure of it after last night as I was breathing well, but pulled up the sheet over the exhaust and held it, sure enough, it reved up again. Does anyone else have this last problem? What can I do about it? I sleep in a cool room with the head of the bed by a window, so, the bedding comes up by habit.
I tried another FF mask by Sleepnet, the Mojo, and it worked a while but failed due to the fit changing with my face swelling.
Thanks, Eudofair

OutaSync wrote:Bluesky,

It's been a long time since I had to depend on getting my data from the screen, but it seems to me as though there was something about having to wait until after 12 noon before the data would show up. I could be wrong, but I don't think you can check it right after you turn off your machine.

Can someone help her out with this? My memory is shot.

Bev

Thanks Bev, that's a good point. I remember with my Resmed machine I had to check the data before 12noon because it would clear then for the next day. I've noticed with this Respironics machine that the data is the same when I wake up and when I go to clear it before going to bed at night.

Over the last few days I've started to find the LED data more reliable - one night it recorded 5 hours worth, which was a good sign. It still shows zero about once every 4 nights, but I'd still rather have this machine than my previous one, because my AHI is lower.

Thanks heaps for your help, Bev.

Bluesky

-SWS wrote:

BlueSky72 wrote:

-SWS wrote:

BlueSky72 wrote:I have mostly OSA with some centrals that are medication-caused.

BlueSky72, are you sure the central apneas are under control or negligible?

SWS, I am sure they are neither. But I have no way of treating them, due to being uninsured. I will eventually pay for a BiLevel out of pocket, but that is a long way off. The centrals are probably at exactly the same level as they were in March and the first half of April when I did not have such a profound level of fatigue.

You raise a good point though... maybe I am having more centrals for some reason eg a new medication (I take so many it's hard to keep up) or being stressed and over-tired from doing too much (there is some personal / practical stuff going on in my life). What I want is solid enough therapy that it can take these things... or at the very least, I machine that gives me reliable data so I can fix it myself. As long as my CPAP therapy is as optimal as it can be, then somehow it makes it easier to tolerate not having a BilLevel yet.

BlueSky72, I agree with your strategy of addressing all those issues you mentioned.

But do you perchance remember how many/few central apneas they scored during your sleep study? Central apneas can sometimes be episodic---occurring in fits and spurts from one night to the next.

I'd recommend first attempting to optimize CPAP treatment the way you are. If for some reason things don't seem right after that, then I'd suggest revisiting whether central dysregulation perhaps plays a more prominent if not episodic role. Good luck!

Thanks for your help, SWS. The centrals were about 8.0p/h in my sleep study, all clustered at the start and end of the night. They are medication-induced, so I've always assumed they are fairly constant from night to night (as the medication does is always the same). I had a 3-night home oximetry study as well, to see if taking minimal or increased meds on different nights made a difference. Sure enough, the best night was the one with minimal meds. What is central dysregulation?

Wulfman wrote:Have you done the "Teflon tape fix" to your mask yet?

viewtopic.php?f=1&t=33452

Your DME is either a liar or an idiot....or both.
Respironics came out with Encore Viewer a couple of years ago.....for the USERS.

https://www.cpap.com/productpage-bundle.php?BundleID=64


Den

Thanks Den, that's all useful. My mask has never leaked or made noise at the elbow (I must be lucky) - it leaks and buzzes between the cushion and my skin.

My DME is indeed both
Unfortunately my only other options are either more expensive or overseas. I'll be using the overseas company in future

Is the Encore Viewer sufficient for getting good info on my therapy? Or do I need the Encore Pro?

Sleepy Boy wrote:I wait about 2 hours to check my LCD screen. I don't have a card reader either. I think Den can tell you exactly how long it takes. Sleepy Boy...

Thanks Sleepy Boy... and good luck with your therapy. Blusky