Looking for CPAP Insight...

Hi All,
New here and I swear I am not a troll, spammer or anything of the sort. I am the loving wife of a moderate OSA & asthmatic man who uses a CPAP machine (Respironics REMStarPro M Series, full face mask with humidifier).

***I am also a writing student currently taking a health writing class. In order to understand my hub's condition better and craft a good story for an assignment, I am writing a piece about Obstructive Sleep Apnea, early intervention and use of CPAP & surgery as solutions.
If anyone wants to PM me about their success with either CPAP or surgery, or issues they've had with either, feel free to do so. If not, that's cool too.***

Anyway, Hub's has not been consistent with his CPAP. Mostly because he just doesn't feel comfortable with it, particularly in its highest setting which when I tried it felt like a wind tunnel. Some nights, he'll use it for 2-3 hours and then stop, citing sinus issues or discomfort. Lately, since reading literature for my aforementioned paper, I've really been pushing him to use it more. So he was using it every night for the last 2 weeks and then the freakin' mask broke. So he gets a week or two of CPAP-break while the new part is shipped. I wonder if there is another machine he can use that isn't so forceful, or some way to make it more comfortable. I am encouraging him to see the specialists and ask for their input and possibly do a new sleep study to see where he's at since he has lost weight in the 4 years since diagnosis. They have never mentioned surgery as an option and I don't know if he'd want them to start yanking things out, but if it at least results in the CPAP going to a lower setting, it might be worth it. Any ideas?

Please read the info in the wiki (lightbulb)

Depending on the machine he has adjustments can be made to the exhale functions. Unless we know the machine and his pressure there is very little advice we can offer.

The comfort level depends more on the mask then on anything else. He has to try several different mask and make sure they fit right. In order to ensure the correct fit he should try the masks while lying down and have the machine at his pressure level. Kind of like trying on running shoes by running around the store. Would you buy any shoe without walking in it, especially a shoe that you would be standing and walking in everyday and costs over $200?

phillywriter wrote: ***I am also a writing student currently taking a health writing class. In order to understand my hub's condition better and craft a good story for an assignment, I am writing a piece about Obstructive Sleep Apnea, early intervention and use of CPAP & surgery as solutions.
If anyone wants to PM me about their success with either CPAP or surgery, or issues they've had with either, feel free to do so. If not, that's cool too.***

For much of my two steps forward, one step backward journey into CPAP-land, please see my blog at http://adventures-in-hosehead-land.blogspot.com/ . The biggest issues I've had are aerophagia and insomnia that started within the first three days of starting CPAP.

Anyway, Hub's has not been consistent with his CPAP. Mostly because he just doesn't feel comfortable with it, particularly in its highest setting which when I tried it felt like a wind tunnel. Some nights, he'll use it for 2-3 hours and then stop, citing sinus issues or discomfort. Lately, since reading literature for my aforementioned paper, I've really been pushing him to use it more. So he was using it every night for the last 2 weeks and then the freakin' mask broke. So he gets a week or two of CPAP-break while the new part is shipped.

Where the heck do you live that it takes 2 weeks to ship a mask?

Unfortunately, a one to two week CPAP-break is likely to put hubby right back at Square One in terms of trying to get fully adjusted to the CPAP so that he can fully adhere to the prescribed therapy.

I wonder if there is another machine he can use that isn't so forceful, or some way to make it more comfortable. I am encouraging him to see the specialists and ask for their input and possibly do a new sleep study to see where he's at since he has lost weight in the 4 years since diagnosis. They have never mentioned surgery as an option and I don't know if he'd want them to start yanking things out, but if it at least results in the CPAP going to a lower setting, it might be worth it. Any ideas?

How much does HUBBY know about his own condition?

Does he know what his diagnostic numbers were? Does he know what pressure his machine is actually set to? Does he know the exact name and model of his machine and mask? How many masks has he tried through the years? How often does he replace parts before they break?

As BlackSpinner indicates, mask comfort is critical for adjusting to CPAP. But I'd also add that knowledge about the treatment ---including tracking your own efficacy data--- is a powerful motivator in finding the stubbornness needed to stick with CPAP therapy through thick and thin until it manages to start helping you feel better.

thanks for the fast replies. robysue, i just bookmarked your blog, thx a ton for sending it. when i got to the part about ripping off the mask in the wee hours, i was like "that's HIM!!!!" is it ok if i PM you?

as for how much Hubs knows about his condition, he knows the basics from what he looked up following initial diagnosis and whatever the doctor told him during their consultations. unlike a new car, computer or television, he did not do a dedicated and prolonged bit of research on his disorder. thankfully, as he reads over my shoulder at night while i work on this paper, he is learning new things and perhaps some of it is sinking into that rather thick skull. lol

i think that once he started using it and didn't have the miraculous results that others using CPAP have expressed, he convinced himself that it wasn't worth the effort and looks for reasons not to use the thing. if he would follow-up with the sleep specialists and tell them about his issues, i am sure there is something that they can do in terms of changing the mask or machine or something. my mission this month is to nag until he makes the appointment because its too important to ignore.

his machine is the the Respironics REMStarPro M Series, Model # 1022334 -- I think its this one unless they have upgraded the model in the last 3-4 yrs: http://remstarpromseries.respironics.co ... tions.aspx

they tried him with different masks during his 2nd sleep study after diagnosis, but once he got his CPAP, he never tried a different type. no he doesn't change anything until it breaks *rolls eyes*. i am going to have a deeper sit-down with him this week and see if we can get to the root of these issues and make sure that we're on the same page. we don't discuss his OSA much and i was content to be uninformed, thinking he knew his body best and that it wasn't such a big deal. i thank ye gods that i decided to write this paper because i might have let him go on like this and endangering his health.

i am trying to get better educated so that i can make sure that he is doing the right things for his health, so i appreciate all the comments.

phillywriter wrote:thanks for the fast replies. robysue, i just bookmarked your blog, thx a ton for sending it. when i got to the part about ripping off the mask in the wee hours, i was like "that's HIM!!!!" is it ok if i PM you?

PM anytime you want.

i think that once he started using it and didn't have the miraculous results that others using CPAP have expressed, he convinced himself that it wasn't worth the effort and looks for reasons not to use the thing. if he would follow-up with the sleep specialists and tell them about his issues, i am sure there is something that they can do in terms of changing the mask or machine or something. my mission this month is to nag until he makes the appointment because its too important to ignore.

Have him spend some time around here and he'll meet lots of folks who didn't have miraculous results either. My own humble opinion is that the folks who start to feel noticeably better in a week or two are pretty rare birds. But the difference between those of us still at cpaptalk and your hubby is that by and large, we've made the conscious decision to do the work necessary to make this crazy therapy work for us instead of passively thinking of cpap as a nasty thing that's being done to us. I guarantee that every single problem your hubby can think of that he's had crop up has been faced and usually conquered by many a user here at cpaptalk. Sinus issues in particular are pretty common and there's a lot of self-help that can be done to make the sinuses more happy. Does hubby have a humidifier that works with the cpap? Does he use it?

And also I think many sleep docs promise way to much in terms of quick results for CPAP therapy. I don't think the docs mean to mislead; rather I simply think that the overwhelming number of sleep docs and their PAs and nurses (and the folks at the DME) have never actually had to try to sleep with a CPAP and so they are kind of clueless about the real reasons why so many folks abandon therapy within the first year or never really become fully "compliant". (The language used to describe what's going on is typical of the issues---it's easy as a patient to think the doc or dme blames you when you run into serious problems.)

his machine is the the Respironics REMStarPro M Series, Model # 1022334 -- I think its this one unless they have upgraded the model in the last 3-4 yrs: http://remstarpromseries.respironics.co ... tions.aspx

Does the machine say Pro on it? If it does, then I believe that it should record full efficacy data. Has anybody (the DME, the doc, or your hubby) ever bothered to download and look at the efficacy data? If you want to do it yourself, you'll need a card reader (I believe that our host cpap.com still sells them) and a copy of Encore Viewer (cpap.com sells it for $99) or Encore Pro (can be downloaded from torrent sites). But SleepyHead will not work with the M-series machines.

they tried him with different masks during his 2nd sleep study after diagnosis, but once he got his CPAP, he never tried a different type. no he doesn't change anything until it breaks *rolls eyes*.

Well that could well be adding to his discomfort problems: The mask cushions/seals do wear out long before something breaks. And sleeping with a worn out cushion or set of nasal pillows makes for a miserable night of fighting leaks. And leaks lead to all kinds of comfort problems. And leaks and their related problems can easily crop up when you are sound asleep so you don't remember them the next morning, but you wake up wondering such things as why is my moth so dry this morning?.

i am going to have a deeper sit-down with him this week and see if we can get to the root of these issues and make sure that we're on the same page. we don't discuss his OSA much and i was content to be uninformed, thinking he knew his body best and that it wasn't such a big deal. i thank ye gods that i decided to write this paper because i might have let him go on like this and endangering his health.

Best of luck with the talk. And try to get hubby to realize that in in the long run, that cpap of his is a pretty cool piece of technology and is far more important (albeit far less fun) than a new car, computer or television. And since his current machine is 4 years old, he'll likely be eligible for a brand new spanking CPAP in a year or so that if he does his research will have even more bells and whistles for helping HIM to manage his OSA than his current machine does.

If you've had it for a while, your insurance will probably pay for a new mask. You should always have at least one spare.

Apnea and CPAP is simple.

CPAP is the gold standard.

Surgery is iffy. In my opinion, it almost amounts to quackery or butchery unless there's unusual pathology. Success rates are low. Surgeons often report "success" when the patient wouldn't agree. (Maybe "success" means "the patient didn't die.") Successful surgery patients often need CPAP anyway or need it after a few years.

CPAP is reversible. Surgery isn't.

Oral appliances sometimes work, but that's rare, and they are often very expensive. At least they're reversible.

The state of CPAP treatment is very bad these days. The modern CPAP machines have a wealth of capabilities and data reporting. Most doctors and DMEs (CPAP seller) do the absolute minimum to meet insurance requirements. Good CPAP machines record waveforms of the patients breathing all night every night, and record "events" that show when the patient has apeneas and what type they are. Most doctors and DMEs don't look at the waveforms and see what really happened. A few will look at the count of apeneas. This is like treating a heart attack patient in the hospital by checking his pulse and not bothering to look an an EEG.

As for apnea, the important thing is apnea kills.

Sometimes slowly and silently. Like boiling a frog.

Sometimes slowly and painfully. Like the death of a thousand cuts.

Sometimes suddenly by stroke or heart attack.

Even worse, sometimes it doesn't kill, it just wears you away to nothing.

By the way, you might want to expand your topic from OSA to Sleep Disordered Breathing. It's not all "obstructive."

thx archangle for your comments... except for the boiling frog... that's gonna creep me out for a while.

my professor wanted something very specific. i was going to include others, but i think it was too broad and i wouldn't be able to do the whole range of them justice in a 1500 word paper. so i (with complete and utter bias) picked the sleep disorder that Hubs has and that is fairly common. if i had unlimited time and length requirements, i would certainly want to do more.

its an interesting thing about the surgery. i spoke to a doctor and he hedged on it. i don't think he wanted to diss his peers but he said in a roundabout way that he had doubts about effectiveness. moreso because he felt the surgeons were operating on anyone who asked, as opposed to the ones that would benefit the most from it. i don't think its an avenue Hubs would want to pursue at this point. i think we'd want to go balls-out with the CPAP for a while longer, with all the knowledge we are now gaining.

LOL
Good one, Archangle!
I guess I'll stay out of YOUR kitchen!

chunkyfrog wrote:LOL
Good one, Archangle!
I guess I'll stay out of YOUR kitchen!

Don't worry, you won't feel a thing.

phillywriter wrote: its an interesting thing about the surgery. i spoke to a doctor and he hedged on it. i don't think he wanted to diss his peers but he said in a roundabout way that he had doubts about effectiveness. moreso because he felt the surgeons were operating on anyone who asked, as opposed to the ones that would benefit the most from it. i don't think its an avenue Hubs would want to pursue at this point. i think we'd want to go balls-out with the CPAP for a while longer, with all the knowledge we are now gaining.

Part of the problem is that surgeons have a different definition of success then apnea patients. We look for no more apneas, they don't - a slight opening of the airways and that you are still alive is good enough for them.

archangle wrote:

chunkyfrog wrote:LOL
Good one, Archangle!
I guess I'll stay out of YOUR kitchen!

Don't worry, you won't feel a thing.

ROTFL! Seriously, I am!

OT: This was my grandmother's theory of cooking lobster. Gradually warming the water (with a little sherry in it) relaxed the lobsters and made for a more tender dish.

Just a quick update.
I did talk to Hubs about the message board here and all the information I'm finding and he is taking an interest.
His new headgear hasn't come yet because the young lady at the pulmonary doc's office didn't fax the Rx over to the CPAP supplier. When she asked Hubs "We do that here?", I guess that should have been a clue. He called back and someone who was more familiar with the process said she'd send it through. I wish he could order a spare mask, but the insurance only covers one. Perhaps early in the New Year when the budget is not so strained, we can just pay out of pocket for an extra one.
Thanks again for all your comments and suggestions.

I used the M series and also found the pressure on thsat machine overwhelming. I have since purchased a fisher and paykel ICON auto and the pressures on this machine (at the same number... ie 17 on both machines) to feel much less annoying. This has made my slepping far more comfortable.

philly,
It would be good to know if CFLEX is turned on. That's a form of exhale relief that'll be available on the machine that he has.

He could also end up with an auto machine which would allow for a range of pressures instead of the one set pressure that the PRO allows.

He should find out what your insurance replacement schedule is for all "parts": mask, mask cushion, hose, humidifier water chamber, cpap machine filters, etc. so that he can have a collection of spare parts, at least one spare for each part in case of breakage. Also, does he know when to replace certain items, like when to change the filter in the machine or when to replace the hose, for hygiene reasons?