Newbie from downunder

[tman86]

Hi All,

By way of background I should point out I live in Australia. It's been interesting seeing how different my diagnosis experience has been than what seems to be the norm in the US. (No proper titration for me and I'm still not entirely sure what the Aussie equivalant of a DME is, if there is one at all).

I basically saw my GP who referred me to a respiratory physiscian. I did a home sleep study on Friday last week and got the results on Monday morning, got diagnosed with OSA and I had an AHI of 82. My Doc has given me a Resmed S9 Autoset and a Mirage Quattro FFM to try out for two weeks, I assume that that's how he'll work out my pressure settings? (after that I'm on my own to purchase equipment from specialist stores, my insurance doesn't cover the machine so it's all out of pocket expenses - but I'll definatley be buying from the states, it costs about half what I'd pay here).

My experience so far has been

Night 1 - Took the mask off after about two hours,
Night 2 - took it off after about 5 hours, after waking up every hour or so
Night 3 - made it through most of the night with the mask on, after waking up twice (and had my first rainout! - not pleasant)

According to my machine my AHI is still around 5ish, the machine is using Autoset between 4 and 12 but is generally hovering around 9 once I've fallen asleep.

My experience last night has given me hope that I will be able to actually be able to get used to this thing, but I still had a few questions/concerns which I would love some help/advice on.

1) My biggest issue is waking up and realising that the mask is leaking. I'm definately what they call an active sleeper and I think this might have something to do with it. Then I have to turn the machine off and back on again so that the pressure drops to a level that I can bear. I guess it's just frustrating that not all leaks can be fixed just by re-arranging the mask, i'm still having to make these minor adjustments to the mask straps - does this ever go away?

2) My other issue is when I have to go it alone and what mask to get. I know it's all very individual. I was given the FFM as I was told that because my AHI was so high I needed one, but my friend who was also recently diagnosed had a higher AHI than me and he uses a nasal mask. I really want to try nasal pillows, but I know pre-diagnosis I did sometimes (about 50% of the time) wake up with a dry mouth, so I suspect I'm a mouth breather in my sleep. I'm reluctant to outlay the cost of nasal pillows (and thats what I'll have to do, I can't find anywhere local where I can return a mask if it doesnt work out) if I find out I breathe out of my mouth too much. I've been reading about chin-straps, and I'm wondering how successful that might be if it turns out I am a mouth breather? Or is there anyway I can use the data to see if I am a mouth breather (I already downloaded Sleepyhead!). Just as per above, the FFM just seems to be too leaky for me.

Any help/advice/motivation much appreciated. (Hope my rant made sense)

PS Am so thankful for this forum, it's really given me a wealth of information on the different options available to me.

[kaiasgram]

Hi tman -- Full face masks are probably the most challenging as far as getting leaks under control. The FF mask users here will have some suggestions that have helped them. I've only used nasal pillows.

There's at least a fair chance that you were a mouth breather because of your apnea, and that on cpap you wouldn't necessarily keep mouth breathing. I think a nasal pillow mask is worth trying in any case especially if you toss and turn a lot. Some people just learn to keep their mouth closed while asleep, others use a chin strap, and still others use sensitive skin tape.

By the way, there is absolutely no correlation between the severity of your apnea (AHI), and what kind of mask you will do best with. I can't imagine why you were told that, but much of what goes on here is correcting some of the dumb things the sleep professionals say. Some people have had a little difficulty using nasal pillows at very high pressures, but if you're averaging around 9, it should be no problem for you.

You can often make a good educated guess about leaking due to mouth opening/breathing by looking at your leak graphs in SleepyHead. So if you can, post a screenshot or two and we'll give you feedback about what we see. Keep in mind that mouth leaking is not necessarily the same as mouth breathing -- sometimes your mouth just falls open a bit.

In just a few nights I think you're doing really well adjusting to the machine.

1) My biggest issue is waking up and realising that the mask is leaking. I'm definately what they call an active sleeper and I think this might have something to do with it. Then I have to turn the machine off and back on again so that the pressure drops to a level that I can bear. I guess it's just frustrating that not all leaks can be fixed just by re-arranging the mask, i'm still having to make these minor adjustments to the mask straps - does this ever go away?

2) My other issue is when I have to go it alone and what mask to get. I know it's all very individual. I was given the FFM as I was told that because my AHI was so high I needed one, but my friend who was also recently diagnosed had a higher AHI than me and he uses a nasal mask. I really want to try nasal pillows, but I know pre-diagnosis I did sometimes (about 50% of the time) wake up with a dry mouth, so I suspect I'm a mouth breather in my sleep. I'm reluctant to outlay the cost of nasal pillows (and thats what I'll have to do, I can't find anywhere local where I can return a mask if it doesnt work out) if I find out I breathe out of my mouth too much. I've been reading about chin-straps, and I'm wondering how successful that might be if it turns out I am a mouth breather? Or is there anyway I can use the data to see if I am a mouth breather (I already downloaded Sleepyhead!). Just as per above, the FFM just seems to be too leaky for me.

Any help/advice/motivation much appreciated. (Hope my rant made sense)

PS Am so thankful for this forum, it's really given me a wealth of information on the different options available to me.

[RogerSC]

I'm hoping that there's some place like cpap.com for you, where you can buy separate "return insurance" when you buy a mask. That's an amount that you pay that allows you to return a mask that you bought within 30 days for a full refund (minus the "return insurance", of course *smile*). I always pay the extra for that when I buy a mask, since you never know whether a mask will work for you.

Since you were talking about buying from the states, I'm wondering if you can use cpap.com in some way, but I expect that you would have to have a special arrangement for return insurance, since I doubt that you could get it back in (round trip shipping plus try-out time) the standard 30 days. You'd have to talk with them about that, I'd hope that they would do something to accommodate you on that. Like not count the shipping time as part of the 30 days or something *smile*.

I would encourage you to try a nasal mask and/or nasal pillows if you think that they might work for you. You're going to be spending a lot of time wearing these things, and you want to get the best sleep that you can. I agree that it takes a while to get going with all the equipment, I actually used Ambien for about a week to get over the hump on that one, to help me get used to sleeping with all the gear. I also use ear plugs so that all I really hear is the sound of my own breathing, which is better than listening to the machine. I was using ear plugs before CPAP since I'm a light sleeper, anyways, so I've just continued to use them. It just takes some time to accustom yourself to doing something you've been doing all your life (sleeping), all differently. Not really surprising, I guess.

Anyways, you sound like the type of person that will hang in there and make it work. I hope so, that's a much better choice than going the other way.

Take care.

[snoozysue]

Just be careful buying your machine outside of Australia. In the time I have had mine it has gone back twice to be repaired under warranty (I bought extended warranty) and both times I was given a loan machine. I have bought a "slightly used" back up machine form secondwind in US and they were excellent and set the machine up for me and it arrived very securely packed - all safe and sound. Masks can be found on ebay too. Maybe list your location and someone might be able to provide you with some useful local contacts.

[Pugsy]

Using cpap.com for equipment is going to be problematic due to Resmed enforcing an international shipping ban to prevent US suppliers from shipping out of the country. Masks or machines are prohibited by Resmed...cpap.com can't send them out of the US.
The return insurance that cpap.com offers even on masks that they can ship out of the country is going to be problematic due to the time it takes to get to Australia through customs and then back to the US through customs. It's a 30 day exchange time frame from the time you buy it and there is simply sometimes not enough time to make it to Australia...try it out and get it back to cpap.com before the end of the 30 days.

If you are going to want another Resmed S9 Autoset (like you are trialing) you might check with secondwindcpap.com. Their S9s go quickly though so sometimes stock is very limited. They will ship internationally. Check with them about current S9 AutoSet availability and pricing. They sometimes have new open box specials at great prices and they still offer the 2 year warranty. PITA to ship back but the S9s don't have a strong return history...most of the time there aren't any problems.

The other main player in the cpap machine market would Respronics...and the Resprionics equivalent to the S9 Autoset would be the PR System One Auto Cpap model 550/560. The 560 has the heated hose option which correlates to the S9 Climateline heated hose option.

Regarding trying a nasal or nasal pillow mask...do give it a try. I thought I was a mouth breather too but once I stopped gasping for breath all night with effective cpap therapy my need to breathe through my mouth pretty much went away.
If you can normally breathe through your nose just fine during the day....it's worth a try because they are easier to seal and generally more comfortable and worth trying. That statement about your AHI prevents your wearing a nasal mask...pure BS.
Kenwood (forum member here) had AHI well over 100 and he does extremely well with nasal pillow mask once I twisted his arm enough to talk him into at least trying it. If you do a forum search for member Kenwood...his story can be found in his signature. He didn't think he could use a nasal pillow mask either but because of his high pressures (20 cm)..

Rain out...get the heated hose with whatever machine you get. It greatly reduces the chance of rain out. While rain out doesn't hurt us it is highly annoying and disturbs sleep and for that reason it needs to be eliminated.

[Sean Kaye]

I did my sleep study back in April and had an AHI of just over 77.

I'm a mouth breather, no doubt about it.

I went with the Fisher and Paykel Icon+ machine and have tried a few masks.

The Respironics Amara was the one I used for my first three weeks - it cause a few problems on the bridge of my nose so I had to get a Gecko Nasal Pad.

I then tried the Quattro FX for a few nights - first night, awesome, second night, not so much. I just couldn't get it to seal properly and my facial bone structure meant the straps kept sliding up under my eyes.

I then tried the Fisher & Paykel Simplus. I've been using that one ever since. I actually had to have one replaced because the headgear fell apart, but it was only six weeks old so it was a straight replacement.

Here in NSW we have what I refer to as CPAP Suppliers. I use Benchmark Sleep Services in Crows Nest here in Sydney.

They rented me a machine for a month and let me try all different masks and everything. Then after the month when I settled on the machine, they gave me the rental charge off a new device.

My machine and mask are partially covered under my private health insurance, so I can get some of the money back - I think I paid about $2200 for both the machine and the mask.

[tman86]

Wow, thanks for all the advice all. Quite a lot to consider.

I think I definitely will try a nasal pillow mask, reading the reviews etc. it just seems like they work on a lot of people (and as a statistician, I have to go with the numbers :-p). Might post some Sleepyhead data when I get a few more nights in.

Snoozysue - that's the one thing that is worrying me about buying from the states, even though my Doc flat out recommended it! If something did go wrong...second hand could be an option. What's the realistic life of a machine? >5 years?

Will keep you all posted with my progress anyway, I'm sure

PS I'm in Sydney for those interested

[Madbear]

G'day tman86 and welcome to the dark underworld of CPAPs in Australia I am also in Australia (Canberra) and a few months ahead of you on my OSA journey.

After a couple of unsatisfactory experiences with local 'professionals' I decided to go against my doctors orders and "do something silly like buying stuff on the internet". I bought a machine and a couple of masks from two different suppliers in the US for about 35% of the local cost and have been very pleased with the outcome so far. I went with the thought that I probably had no warranty really but for that sort of price reduction it was something I was willing to take a punt on.

I think I was probably a mouth breather but I didnt like the idea of strapping a huge mask to my face so I thought I could train myself to nose breathe using tape if necessary. However after experiencing the unpleasant feeling of air rushing from my open mouth with a nasal mask on I now keep my mouth firmly shut!

In case you have not discovered it, there is a very large thread on CPAPs in Australia on the whirlpool.net.au forum which has some excellent tips on importing gear from the US and is well worth a read. Good luck.

[Steve of Cornubia]

Hi Newbie.
I'm in Oz too, though that has no bearing on what I'm going to say.

It DOES get easier. In fact, just over six months after starting CPAP, I now can't bear to sleep without it. The odd time I've tried, I am so much more aware of the apnea it's scary.

Anyway, my bit of advice is - as a FF mask user myself - it's all down to technique. Firstly, you have to learn how to sleep while attached to the machine by a hose. I'm a mobile sleeper myself and this took a while, but now it's second nature. Secondly, dealing with leaks (when using FF masks) is another learning experience. I am a mouth breather for part of the night, starting off breathing through my mouth because I'm usually unable to breathe through my nose. However, I start off on my back and this, perhaps in combination with that CPAP (not sure) but my nose seems to clear after a while and then I switch to nose breathing.

Ane therein lies the 'problem'. You see, if I use the mask measurement thingy (Resmed) with my mouth open, I need a medium. Measure with my mouth closed, and I need a small. Hence, leaks are almost inevitable no matter which size I use, depending on whether my mouth is open or closed. To date, the best answer has been to strap the mask on pretty tight. This seems to work but I was only able to do this once I was used to wearing the mask. At first, a tight mask drove me nuts but now I'm used to a tight-fitting mask and I have little trouble with leaks. The only downside is that my face has strap marks for a couple of hours after awakening (partly because 57 year-old skin doesn't bounce back very quickly ) As a consequence, some mornings when I have early meetings, I set the alarm early!

Good luck mate.

[jedimark]

Welcome fellow Aussies

Despite how unnatural it feels breathing through a hose, it definitely gets easier with practice, and eventually becomes habit.

We pay a premium tax both on breathing in and out in Australia, unfortunately we don't have much choice... Even with expensive postage it's still much cheaper buying overseas, but as has already been mentioned, our options are limited thanks to ResMed being a flaming bunch of pansies.

I'm fairly lucky with mine,I bought my main machine over 2 years ago from our hosts here at CPAP.com for a lot LOT less than it would cost me local, and had no trouble with it... it's in better health than me

Wrangling those leaks and keeping them low makes a world of difference.. To do this you need to make sure you have a machine that logs some real data, not just hours of use.
It helps having some good software too

Read through this forum.. there's tons of neat little gems hiding around here. Painters tape, KY jelly.. You name it, there are tons of ingenious solutions that can make the difference between you feeling like a zombie and a fully functional human being.

The rest is time.. and don't forget to pay attention to how you feel (keep a diary helps sort out problems later down the road) Don't be afraid to tell your Doc things aren't working as optimally as you'd hoped.. Also having a good chemist who sells and checks CPAP gear helps. Find a good one that loves to see the numbers, and knows how to tweak your machine if you need it.

[Julie]

Hi - Having to overtighten straps is not only uncomfortable (and sometimes embarrassing for a couple of hours afterward), but it can actually create micro leaks where they otherwise wouldn't be. A better answer for a lot of people (here, anyhow) is Padacheek.com - the owner is a patient here and the liners ('interfaces') she makes often solve leak issues - sort of fills in the gaps... certainly worth looking at.

[chunkyfrog]

Mask liners are very nice; a quick DIY cut out of soft fabric, clean dried baby wipe, or even paper towel,
will give you an idea how it feels--then you will want the Pad a cheek--they are so nice (and they last a long time)
The strap liners are the best!

[Sean Kaye]

I just sent the folks at Padacheek an email this morning asking a couple questions about the liners and strap covers for the Simplus mask.

I'll certainly be trying them out - I'm getting good enough results with CPAP that I'm happy experimenting to keep looking for that extra couple of percent better result, but I'm comfortable in the knowledge I have a good setup now that I can go back to which works.

I think I'm going to try the FitLife mask and the Quattro FX again.