Frustrated and need help please!

[NightWorkDaySleep]

So I was "officially" diagnosed with OSA last January...Although I have to admit, I knew it was going on for years I was just trying to ignore the problem but obviously that didn't work. I was given a Cpap with cflex and a nasal mask and used it for a couple of weeks but just could not get comfortable, and I was ALWAYS congested and gave up.

I've made a decision that I just need to "suck it up" and figure out a way to make it work and I am hoping to get a little help. I went ahead and bought two more masks, and have used each for a week, a omni 360 nasal pillows and a liberty at the advice of my MD. She started me on nasal steroids. I did a little reading here and now I have pad a cheeks and tube covers on the way...

So far I am most comfortable in the omni 360...it touches my face the least and that's what I am having the biggest problem with. I HATE having things touch my face...can't even wear makeup because of it...and you should see how much I freak working with surgical masks! I have worn glasses my entire life and thats ok/as are sleep masks (I work nights) but ugh the plastic around my nose is just awful.

Does anyone have any other comfort suggestions for my face? and what about the congestion, I find the steroids are helping, but now my ears pop!

[cflame1]

for the sinuses, try a sinus wash (neti pot).

[cflame1]

for the sinuses, try a sinus wash (neti pot).

[Julie]

Turn down (or off altogether) your humidifier, it's the most likely cause of congestion.

[Georgio]

Good Morning & Welcome,

I'm using the Opus 360 also. Try a little "Ayer Gel" around your nostrils at bedtime. It's just aloe and makes it more comfortable. I also suggest you try some of the free samples of PurSleep. http://www.cpaptalk.com
I think it takes your mind off of the therapy a little that's great for beginners. I'm using a nasal steroid spray and Zyrtec D to be able to breathe through my nose at night. I'm beginning to think that the Zrytec D may sufficient without the spray. My guess is ear pop is a result of fluids clearing in our inner ears.

I have found that I benefit greatly from reviewing and tracking my nightly data from the machine to confirm my progress!




Good luck with your therapy, it has really helped me. Be sure to hang around and ask any other questions you have.

Georgio

[Babette]

Sinus Rinse by Neil Med is easier for me to than the Neti Pot. I don't do it daily like some people do, I don't need it. But alot of people here swear by it. It took me a few tries to get the hang of it. You really have to breathe through your mouth while you're pushing the water through your nose, or you'll feel like you're drowning.

http://www.neilmed.com

I was a confirmed mouth breather, constantly congested, until CPAP. Then, suddenly, once I started on CPAP, I could breathe through my nose. I breathe better at night with the machine than I do during the day without it.

I run a test drive for my favorite mask - the Nasal Aire II. There are also test drives going on for some other masks. Sounds like you're trying all the right things, just keep tweaking until something falls into place for you.

HYBRID – by pjwalman
viewtopic/t33434/Hybrid-TestDrive-Continues.html

SMALL LIBERTY – by fortomorrow
viewtopic/t35474/ResMed-Mirage-Liberty-Test-Drive.html

LARGE LIBERTY – by echo
viewtopic/t35486/Large-Liberty-test-drive.html

NASAL AIRE II – by Babette
viewtopic/t30639/The-Return-of-the-Grea ... Drive.html

Mask Roulette – thread for swapping masks
viewtopic.php?f=1&t=19546

Good luck and keep posting, and we'll try to help you figure it out!
Babette

[NightWorkDaySleep]

Ok, I just got a few hours sleep with the Opus (would help if I had the name right) on which I guess is good but I am up again...

Georgio My MD recommended KY jelly on the mask but that was awful it dried and was worse. I tried aquaphor but I know thats a no go because its petroleum based. I'm going to have to find the Ayer, I've used antihistamines in the past but I definitely get better results with the Flonase when my symptoms are just allergy related, She also suggested Singulair in the place of Zyrtec or Claritin. I should explain that I'm an RN and very anti-polipharmacy, I have other medical issues including severe GERD and really hate to add medications if I can manage the symptoms other ways.

That being said I have used pressurized saline sprays to try and flush out because I'm too chicken to try a netti pot cflame1, and Babette but that sinus rinse looks like something that I could try. I'll put it on the list with the Ayre.

I've been experimenting a little with the humidity Julie but when I turn it all the way off I seem to get MUCH MUCH worse. of course I only tired it off with the liberty mask, not with the opus...so that may have been part of the problem.

Do you all find that changing the mask type changes your comfort level greatly? It looks like everyone here is in a constant state of flux and the sleep lab gave me the impression that you found something that worked ok and stuck with it "for life" I have to admit I'm pretty ignorant when it comes to what all the Data even means and I work with ventilators and children who LIVE on cpap via tracheotomy daily! we just use different measures of success. and I need to do some research I guess. What kind of information would I be able to get WITHOUT the card reader and software...especially if my DME told me "what smart card" I have the only M series the have ever sold, this is THE machine my MD wanted for me. would you recommend investing in it?

Thanks ever so much for your help

Nights

[Babette]

Well, it took me 6 weeks and 8 different masks before I could find one that I could sleep with all night, every night. I was never 100% compliant before I found my current mask. That said, there's been times when I've contemplated trying other masks, since then. There's always the "bad night" when nothing works right, the seal is futzy, you're coughing, etc. etc. Even when you find the "perfect" setup, you're not immune to the odd bad night.

There are people here who find a good solution and stick with it, and it works for them. Wulfman is a classic example. Me, for no reason that I can fathom, my numbers keep varying, so I'm constantly tweaking things.

Masks are highly individual. My favorite mask will be the one you hate, and vice versa. Same with Cflex, Aflex, Humidity, passover, machines, etc.

My current cocktail of choice is Flonase and Symbicort twice a day. I add Claritin only as needed. I use Benadryl frequently for sleep - I have a bad 3 am insomnia habit - and then the usual mix of vitamins. I take a mild GERD tablet in the PM, though I dispute that I have GERD. What the heck... But, my father, who'se biology I follow more closely than my mother, can't tolerate Flonase at all, and hates the stuff. Go figure.

So..... Keep futzing around until you find something that works.

BTW, Ayr Gel is readily available at Walgreens, as is the NeilMed Sinus Rinse bottle. Trust me, you'll probably hate it the first few times you try it. Or else you're more talented than I and catch on quick and get it immediately. Now it doesn't bother me at all. I use it slavishly when I'm flying, but only sporadically when I'm home. I've developed a certain tolerance to my own personal filth.

LOL,
Babs

PS - Did I mention PurSleep? It seems kinda silly, but it really does take "the edge off" the experience and make you feel more kindly toward your mask. Some folks here swear they can lower their AHI with certain scents. Me, I just use it for the pleasant atmosphere. http://www.pur-sleep.com. I highly recommend the Peace if you can't decide which one to try first. It's lavendar based and very restful.

[Guest]

Do you all find that changing the mask type changes your comfort level greatly? It looks like everyone here is in a constant state of flux

I found changing to a ffm made a huge change in comfort level
and effectiveness of the therapy.
I started down the cpap road w/nasal pillows. It got me started.
I did the cheap chinstrap, the papcap chinstrap, and the polident strip glued mouth.

After a month of that I said enough already.....
I got a ffm.
I over came my claustrophobic fear of said mask.
I over came the brusied and bloody nose bridge.
I bought mulitple ffm, until I have it pretty well dialed in....
and I am not in a state of flux.
I'm in a state of throw my mask on and drift into the abyss.

I know, never say never, but I'm glad I'm on the outside looking in
at all that stuff going on to prevent mouth breathing.......but that's just me.

[fortomorrow]

The mask is seriously the most important thing to get right with your therapy. Keep trying until you find the one you can tolerate the best.

I was specifically prescribed the mask they used during my titration study. And I haaaaated it (ComfortGel nasal mask). I absolutely fell in love with the second one I tried (Puritan Bennett Breeze). I disliked the third one (Liberty). Liked the fourth (Hybrid). Loathed the fifth (Nasal Aire II). I sometimes have leak issues when I use the Hybrid, but never have any problems with the Breeze. But I DO have to tape my mouth shut. But I've got crap skin and using a FFM more than a night or two causes pretty serious breakouts. Strangely, the tape doesn't. So I'd rather tape. Oh, vanity!

Even though I loved the Breeze right away, I still wondered if there was anything better out there, which is why I kept trying other masks. I'm pretty confident now that I have found The One, and I have a FFM for when I'm sick and congested. I don't feel that I need to look around for another mask - I'm pretty darn content!

As Babette said, some people may hate the mask you love and vice versa. I hate her favorite mask, and she hates mine.

I do a sinus rinse with a neti pot (with Trader Joe's sea salt - none of those premade packets for me!) every night in the shower (steam helps, also it's less messy) and take a 25mg tab of generic benadryl every night to help myself stay asleep. The neti pot seriously isn't scary once you do it a couple of times. The first time I tried it years ago I really had to psyche myself into it, but now it's just a normal part of my day. It sort of feels like when you jump into a pool and get water up your nose, but less uncomfortable. The sensation isn't too foreign though, so it's less weird once you do it.

I recently did a course of Prilosec, but I've forgotten to take it the past few days. My acid reflux has been okay, as far as I can tell.

Humidity can worsen congestion. I live in a relatively dry climate and have problems with dry mouth and sinuses, so I tend to keep mine as high as I can without having serious rainout. Lately that's only about 2 - stupid cold bedroom.

As far as information without the card reader, which M Series do you have? (You should fill out your profile!) You can get your AHI and leak rates off the display of most of them (save the Plus) but I've heard tell that it's not as accurate as if you had the card reader and software.

And try some Pur-Sleep. The plastic smell can be really uncomfortable and off-putting for some people, especially those sensitive to smells (like me). Aromatherapy helps that a lot.

[NightWorkDaySleep]

Ah...yes my samples of Pursleep were ordered yesterday...I can't wait! I'm totally embarrassed about how much help I am needing to figure this all out by the way...I'm an experienced respiratory nurse damn it. But this is all just so challenging. I even contemplated asking for a trach, for about two seconds while fighting with the mask this morning! I'm much more used to how those work with CPAP. And my apnea is NOWHERE near bad enough to ever need that!

I have the M series pro...and I can not for the life of me figure out how to find anything but therapy hours/compliance. I'll keep looking. I have problems with dryness without the cpap and have a room humidifier that I have relied on for years and never had congestion from that but I will keep in mind that it may be making the problem worse...I did turn it down to 2 today..it was up at 4.

I think I am going to go to auctions and maybe buy a couple of masks to try...I'm a side/belly sleeper too complicating the issue.

I have turned off the ramp because it was suffocating me, my pressure is set at 11, and the cflex at 3...I'm open to more suggestions so keep them coming!

Nights

[carbonman]

I'm an experienced respiratory nurse damn it.

I have the M series pro...and I can not for the life of me figure out how to find anything but therapy hours/compliance. Nights

We are sorry, BUT, that data is not available to actual RT type persons.

.....only, yahoo cpaptalkers are permitted access to that data.





....and I AM sorry , I just couldn't resist.

[fortomorrow]

There are several mask trials going, if you're interested in any of the masks, be sure and sign up. Babette detailed them above.

I'm a side/belly sleeper as well. I really love the Breeze best for that. It only touches my face on my nares, and it's really simple to put on and take off. There are a lot of other masks that are good for non-back sleepers, most of them are nasal pillows or cannula - the ones that seem to come down from the top and have no side straps (Breeze, ComfortLite 2) look like the most comfortable to ME, but that's just me.

I am pretty sure you need to get into the clinician menu to have it show your AHI/Leak (there's a setting that needs to be turned to ON). If you search for "M series pro settings" it will tell you how to access that data. You can also reset your ramp time and pressure in there.

[Guest]

I have the M series pro...and I can not for the life of me figure out how to find anything but therapy hours/compliance.

Respironics REMstar M Series
To get into the clinician's setup mode in a REMstar M Series CPAP machine or a BiPAP M Series CPAP machine follow these steps:
unplug the power cord from the back of the CPAP machine
lift the LCD cover and press the two buttons closest to the back of the CPAP machine
while pressing the two buttons, plug the power cord into the CPAP machine
You'll hear two beeps and then you'll see the word setup in the lower right corner of the LCD screen. When you select setup you'll be in the clinician's mode where you can adjust every feature of the CPAP machine, including the pressure setting. Below is the list of settings you can cycle through on a REMstar Plus M Series:
CPAP Pressure (only in provider setup mode)
Altitude
Fine Pressure Adjustment (only in provider setup mode)
C-Flex Setting
Ramp Time
Ramp Start Pressure
Mask Alert
Auto Off
Patient Reminder (only in provider setup mode)

[Babette]

Hey, don't feel bad. YOU'RE SLEEP DEPRIVED! Your brain isn't functioning 100%.

Carbonman, well, that's a whole 'nother story....

Anyway, the way to get MORE DATA from your machine is to buy a card reader and software, and insert your smart card into it, and it will upload data to your PC.

Here's some sources for the card reader:

Mako DT3500 USB (Infineer)– $49.00
http://www.securetech-corp.com/mako_dt.html

Mako DT3500 SmartCard Reader USB - $54.00
http://www.cpap-supply.com/Mako-DT3500- ... dt3500.htm

Infineer (Mako DT3500) Card Reader from https://www.cpap.com - $139.00
https://www.cpap.com/productpage/Respir ... r-USB.html

Data Utility File by Phil – phil1001
http://www.mycpap.org/

Encore Pro Analyzer by James Skinner - jskinner
http://james.istop.com/EncoreProAnalyzer/

Card Reader Fix
viewtopic.php?p=189601#189601

Doug’s Fix – dsm
http://www.internetage.com/cpapinfo/sma ... index.html

Various Card Reader and Software Threads
cpaptalk-faq.php?FCID=20#20

I've got even more info, but I'll PM it to you.
B.