newbie with a # of questions

[dawoodsman]

First night, made it 5 hours before I woke up to the wife leaving the bed and saying it hadn't been good for an hour or so. Wide awake as is the norm for me, I know I won't get back to sleep.

1) What is the standard for a mask fitting? I was more than a bit surprised that there really was NO fitting. They had a mask prepared for me when I got there, sight unseen. I asked for a different one--they didn't give me all the options--that I had been shown during the sleep study. Amara view, i think--it's one that does not fit over the top of the nose, rather the nose fits down onto it from above (it covers the mouth). I have a science based education and occupation, and grew up in a family full or people in the medical field. Frankly shocked that they didn't put a mask on me, adjust the straps, test the machine to see if the mask fit or there were leaks (masks can't be universal fit given all the shapes of faces in the world, can they?)--I wasn't even shown anything about adjusting the mask or told what I should look out for. Less than impressed! I chose the supplier as they also are a local sleep study provider with specialists who deal with sleep disorders (though I did not go to them for the sleep study). I figured they might be a bit more aware of the biology and see a wider range of patients than the typical med supply place that sells everything else as well.

2) Went to bed feeling fine with clear airway, woke up stuffed up. I have mild asthma--don't need drugs that often and am not on anything daily. Seasonal allergies too but I haven't had any issues yet--usually do not until spring breaks and pollens show up. I noted a fairly significant plastic smell to the apparatus which wasn't erased by cleaning it. Burning, chemical, plastic smells tend to exacerbate my mild asthma a great deal so I did ask about that but neither my provider nor the med supply place had any info on it other than the usual claims it can often help asthmatics. I found little info suggesting any problems with asthmatics/allergy sufferers online but it appears little research has been conducted into specific issues people with such afflictions have with CPAP equipment. Any discussions of that on this site? My initial search didn't turn up much.

3) what kind of air leakage around various places on the mask is normal? I had quite a bit of that depending on bed position. Noticeable and fairly strong air flow felt on my eyes, other parts of face, and if I held me hand in front of the mask it is like there's a small fan blowing on it. I tried to be exhausted when I went to bed but that felt air flow around the face kept me awake for awhile. I suspect that might be the cause of my stuffiness--and that it's an indication the lack of any real mask fitting is showing up in a mask that doesn't fit. I tried adjusting straps,which actually did more to adjust where the air was leaking around the mask than anything. Are you supposed to strap the things on very tight? I thought the point was to have them fit snug but not so tight that you have lines on your face for hours after waking up?

4) Are there any machines with adjustable pressure? I can adjust ramping on mine but not the pressure it works at under normal conditions. Again the scientist in me is questioning a one size fits all design of these things--I would think everyone is different and there would be some level of pressure adjustment on the things. I have the notion that the pressure on mine is high--exacerbating leakage around the mask, I think--and it has the feel of being more than I need. But at times when the mask seemed to fit well and there was no noticeable leakage around the mask as felt somewhere on my face ( I could always feel air blowing if I held my hand out in front of my face) it was comfortable enough I think it would be something I could easily get used to.

5) This one is only pertinent if its normal to have air blowing on your face outside of the mask from these things. I have dry eye syndrome following Lasik surgery. It is a pain to deal with and there is zero question that if air is blowing on my eyes all night long from leakage around the mask it won't be helpful in dealing with that problem! Any discussion of that issue on this board in the past?

Thanks for any help!

[Julie]

Hi - first thing (or last on your list) - look up Onyx eye shields as they'll help with your dryness - as will a better fitted mask. It's unfortunate that DME"s don't often bother about whether the mask they give you fits properly and most of us go through quite a few while adjusting to Cpap. What they gave you is called a 'full face' mask, the kind that extends to cover your mouth so you don't lose Cpap air if you mouth breathe once asleep. There is also something called a total face mask that does cover most of your face, but they are notoriously leaky and you likely wouldn't need it (few people do). It is important (as you've discovered) to try FF masks lying down because your face changes so much then, while nasal masks (no mouth coverage) are easier to manage and you might only need one of those if you don't mouth breathe. There are also combo ones called Hybrid (or Liberty) that act like FFMs but from below vs above - some people have bridge-of-nose trouble with fitting and prefer them... they can all (very many) be seen for comparison on Cpap.com (who do sponsor the forum, but we are not otherwise shills for them and in fact recommend other dealers on occasion. They will let you try masks for 30 days for a small 'return' fee, but it would be great if you can find a dealer nearby who have a range of masks you can try and that your insce. co. will vet.

Are you using the humidifier? When you said you felt congested I wondered if you'd turned up the humidity thinking it was 'therapy', but it's only to facilitate Cpap when people need it and if you're e.g. in a relatively humid climate, may not need it, or only want a low setting. The burning plastic smell might have been related to not having put water in the humidifier though it was set up for use (by DME), and that's not a good thing, though the smell could have come from somewhere else - you'd need to talk to the DME about it.

Oh, and if you feel air blowing on you from the mask - if it comes from a little patch of tiny holes, that's the CO2 vent and shouldn't be covered by bedding or anything else (don't want to rebreathe that), but you can e.g. wear an old sock on your arm if it helps... not sure it would be a factor on your face tho', and that may be a matter of mask leakage.

I also strongly suggest you register as a member, and fill out your profile so that whenever you post (and try to stick to this thread so we can follow your story) your equipment (full name/model + mask type and pressure settings) etc. will always appear below your notes so we have a jumping off place to try and help you with (see blue under mine).

[tazmania]

1) What is the standard for a mask fitting?

woodsman, you'll find you'll have your best success if you DON'T rely on your medical team to guide you to a better night's sleep. I'm not sure why but for me I get the impression their assistance is very limited. The good people here can help with great tips and suggestions on equipment.

2) Went to bed feeling fine with clear airway, woke up stuffed up. I noted a fairly significant plastic smell to the apparatus which wasn't erased by cleaning it.

You will have to find the sweet spot with your humidifier setting. Also if you're leaking air the passing of air through your nose and mouth could be one of the culprits. I've just recently remedy the issues with dry mouth and that's also cleared up some of the congestion I felt each morning.

The smell does dissipate after some use. Try some of the cleaning suggestions for you hose and mask you'll find on this site. That may help speed up the reduction of that plastic smell. Outside of that hopefully you can just give it time. It will get better.

3) what kind of air leakage around various places on the mask is normal?

Just validating what Julie said about masks. I have never used a FFM. Always used nasal pillows and I have very little issues with mask leakage (mouth breathing is another story). The pillows fit in your nostrils in a very comfortable but fairly tight seal. If you can't get a good seal with your mask and mouth breathing isn't an issue for you I'd suggest a set of nasal pillows. FYI I assume they are far more comfortable than a FFM simply because the pillows are so much smaller. I have the Airfit P10 model and I really like the way it fits, both pillows and the headgear. My old one was a strap it down model and that strapping pressure was fairly uncomfortable.

4) Are there any machines with adjustable pressure?

Someone else may answer from experience but I'm under the impression they ALL can be adjusted. On some models you have to know the sequence of buttons to push to get it into SETUP mode. You will want to figure out how to do this on your model because sometimes in your experimenting adjusting pressures may be key.

5) This one is only pertinent if its normal to have air blowing on your face outside of the mask from these things.

Sorry no experience with FFMs.

[robysue]

dawoodsman,

Julie and tazmania have covered the mask issues very well.

I do want to say something about this:

4) Are there any machines with adjustable pressure? I can adjust ramping on mine but not the pressure it works at under normal conditions. Again the scientist in me is questioning a one size fits all design of these things--I would think everyone is different and there would be some level of pressure adjustment on the things.

The script that was sent to the DME has a pressure setting specified on it. (You should insist on getting a copy of the script for your own records.)

The pressure setting is set and adjusted inside the clinical menu. And the person who set the machine up for you didn't tell you about the clinical menu because they don't want you to know about it. They should have at least told you what your pressure setting is in my opinion.

Technically speaking changing the therapeutic pressure should be done in consultation with your doctor. However many of us do know how to get into the clinical settings of our machine, and once we know what we are doing, many of us can and do tweak the pressure settings on our own.

It would really help us help you on this issue if we knew the exact make and model of your machine. Many modern CPAPs record what is called full efficacy data, and having that data at hand is critical if you decide to change the pressure settings on your own. That said, I won't be surprised if the DME set you up with a brick--i.e. a base model CPAP that records nothing but usuage data or perhaps just usage and a bit of summary data. Please note: Even the base models have SD cards and modems these days.

I have the notion that the pressure on mine is high--exacerbating leakage around the mask, I think--and it has the feel of being more than I need.

Without knowing what your script says the pressure should be, we can't tell you if your pressure setting is in the high side, in the middle, or on the low side of what the machines can be set to.

But at times when the mask seemed to fit well and there was no noticeable leakage around the mask as felt somewhere on my face ( I could always feel air blowing if I held my hand out in front of my face) it was comfortable enough I think it would be something I could easily get used to.

Two separate things are going on here:

1) The air blowing out wen you hold your hand in front of your face with a decently sealed mask is normal. That's the expected exhaust flow that is designed to prevent you from rebreathing the CO2 in your exhalations.

2) When you fit the mask at the beginnig of the night, you are fitting it at relatively low pressure. Once the machine ramps the pressure up after the ramp period is over, the mask is springing leaks. Masks are much easier to seal at 4-6cm of pressure than they are at 12cm of pressure. The basic fix is to try to fit the mask at full pressure and then turn the ramp on. Some machines have features that allow you to do this easily.

[poppi2]

Welcome. The forum search function is not the best. Better to use Google with the keyword, site:cpaptalk.com, then search string. Good luck, Earl

[Okie bipap]

I use the same mask you were given. I use a mask liner I made to help control the leaks. I also wear a soft cervical collar when sleeping. This helps to keep my my head from tipping forward which would cause my mask to leak.

[Mudrock63]

All very good questions. The air blowing from outside the mask comes from the exhale vents. Most masks come with a swivel hose, and how you position this effects where that air blows and whether it bothers you or anyone else. If the vents are close to a pillow or blanket, it may get diverted back into your face. And result in some noise.

There are usually some good mask fitting videos on the manufacturer sites that may help you. I have my nasal mask strapped pretty tight to prevent leaks at my high pressure. It leaves marks, but it doesn't bother me when I sleep, and good sleep is of overall importance to me, not how I look in the morning.

Everyone's experience with their medical care and DME's is different. All I will say is that not getting great service seems to be the rule, not the exception unfortunately.

[dawoodsman]

Wow lots of great advice--thanks!

I dug a bit further into things--and have a bit more info to offer. No thanks to my DME provider--I picked a real winner there! But the doctors nurses were very helpful

I have an Airsense 10 (I had tried to post what I have but as noted in another thread was denied). I think it's actually set at a relatively low pressure level. Auto adjusting, with a range of 5-16. Starts out at 5. When i woke up at 3 am last night the reading was only a bit more than 6. I might have messed up the auto sensing system the first night due to the fact I intentionally held my breath 4 or 5 times to see what the machine would do. That time I held my breath wasn't much though and I was told the system adjusts to an average need--and the overall time sleeping would have washed out the short times that I held my breath.

Re: the mask. Yes I found the "exhaust holes" myself after looking at the mask in daylight, and was also told about them by the provider. On my mask--amara view full face with pillow nose--those vents are on top in front of the nose. Which has air passing just in front of the eyes. Not a good thing for me, so I will look into the shields and/or a different mask.

There are some real leaks though. I believe they tend to occur more when I relax and my jaw falls down. Then I can feel a leak around my mouth, coming out the side--which side depends on which side I am leaning towards in bed. I can fix them by really tightening the mask. Not what I want to do but if I have to I can I think, just will take longer to get used to.

Also I think the DME provider was relying on the machine to tell her that I had a good fit. Every night I have worn the mask the machine said I had a good fit--despite the leaking mentioned above. But again, that is probably averaged over the whole time I had it on. So I am envisioning this--it fits OK most of the time, but not well enough to fit without leaking at other times. And it appears that might be waking me up--so despite the machine which takes an average reading saying it fits fine, I might need to look into adjutsments or a different mask. The DME fitter--In her little room we put it on, she looked at the machine, said the fit was good and that was all she did. Both my doc's nurse and people here said that the fitting should really have been more rigorous than that!

[Mudrock63]

There is an "acceptable" rate of leakage that the machine can compensate for. That is acceptable from a treatment standpoint. It is NOT acceptable if it is waking you up or causing you discomfort, i.e, blowing air in your eyes. It took me a while fiddling around with the straps to find my sweet spot. If you can't get it comfortable and right, I suggest trying another mask.

[dawoodsman]

I noted that the eye shields are no longer available on site that shall not be named--at least by guests. Checked with an eye doc and they have some reservations about those. Suggest some eye ointment instead. Anyone with experience going that route? I may not need to, might end up with a different mask.

I did get my leaks mostly managed, and I found out some of what I thought were leaks was just air blowing through the vent holes. Still waking up after 2 1/2 to 5 hours and not able to fall right back asleep for awhile (if at all) so wil lkeep trying to find something that works. Thanks for those that helped.

[palerider]

I noted that the eye shields are no longer available on site that shall not be named--

do us all a favor and see if you can't get back to your "I can't post" series of lamentations.

[Julie]

"site that shall not be named--at least by guests" - WTH are you talking about? Are you sure you haven't been brainwashed by another site's regs?

Guests on almost any forum I've ever visited are sometimes (but not always) allowed to post - anything - but don't have 'privileges' of PM'g each other, or creating profiles, etc... but at NO time has anyone here EVER said you could not reference another site! What BS!

[palerider]

"site that shall not be named--at least by guests" - WTH are you talking about? Are you sure you haven't been brainwashed by another site's regs?

Guests on almost any forum I've ever visited are sometimes (but not always) allowed to post - anything - but don't have 'privileges' of PM'g each other, or creating profiles, etc... but at NO time has anyone here EVER said you could not reference another site! What BS!

stupid there is just whining about the fact that he can't post spam links...

[Sir NoddinOff]

I noted that the eye shields are no longer available on site that shall not be named--at least by guests.

Arguments aside... CPAP.com doesn't carry the original Onyix eye shields which I like. There's several different versions out there, and to complicate matters, the old style Onyix eye shields (which were the gold standard IMO) aren't being made anymore. The new Onyix model does NOT look like it will work well with full face masks, tho it will be okay with nasal masks and pillows. Below is a place that sells the older model (which I love). How long will they be in stock??? Who knows but get some if you like them. My first Onyix lasted two years.

http://www.eyeeco.com/product/iproduct_ ... hiled.html

Your eye doctor's reservations about eye shield are a bunch of HOOEY. He just wants you to use a bunch of chemicals in your eyes... expensive chemicals I suspect Both my eye doctors like eye shields.

[dawoodsman]

"site that shall not be named--at least by guests" - WTH are you talking about? Are you sure you haven't been brainwashed by another site's regs?

Guests on almost any forum I've ever visited are sometimes (but not always) allowed to post - anything - but don't have 'privileges' of PM'g each other, or creating profiles, etc... but at NO time has anyone here EVER said you could not reference another site! What BS!

I agree with you, it is an "WTH" issue when a guest can't even mention the name of the site that sponsors this forum without having their post denied for the crime of mentioning a website. And actually in this case I didn't even mention it. I quoted another reply and the name was in the quote. I could not post that reply until I altered the original text to exclude mentioning the name of the site that sponsors this forum.

Like I said, some bizarre stuff here for guests!