new cpap user-problems with mouth leakage even with chinstap

Hello all,

I'm a male, 52 y.o., and have kept myself in excellent shape over the last 30+ years, however, the past 10 or so years my sleep went from bad to worse. A sleep study recently diagnosed me as having ONLY hypopneas,(I talked the medical supplier into discussing my chart), but I haven't yet had a follow up with the doc to confirm.

First, let me state that I'm still a bit skeptical as to the results. I mean, during the study, I was sooooo uncomfortable with both the nasal pillow, and finally the nasal mask. I didn't try the full face. I could hear nearby trains going by, the patient in the next room, the technician across the hall, etc. The room was not fully dark, which of course is a must for someone with insomnia. The room wasn't separately climate controlled, so I was either too hot or too cold. Basically, I was miserable all night long.

The result showed that I supposedly slept for I think around 280 minutes, of which less than half were REM, according to the med. supplier who viewed my chart. My feeling is that my attempt to sleep was so terribly skewed by all the above issues, how could the results possibly be accurate.

At any rate this is what brings me to this forum. I went ahead with the cpap therapy as per the docs perscription. I've been trying a nasal pillow for a week now, with horrible results. Even though the technician said he didn't witness any mouth breathing during my study, I am now coming to realize that indeed that seems to be my main problem (which again shows how inaccurate the sleep study was, IMO).

The first night was basically a bust, with air escaping out of my mouth all night long, and of course waking me up just as I drift off to sleep. Ever since then I've been trying a chin strap, with no better results. Even though my mouth is clamped shut, it seems my tongue is relaxing and falling back, which in turn allows the air to find "the path of least resistance", so to speak, and again waking me up. So between that, and my head feeling like it's in a vice, and basically being terribly uncomfortable, my sleep is worse than before the study.

I believe I'll swap out the nasal pillow(Res Med Swift FX) for a full face to see if I can tolerate that. I however tend to sleep on my side for a lot of the night, so I tend to not think that will be successful, especially reading about all the issues with leaks, etc., with full face.

I've read about people using tape to keep the mouth closed, but I've worn a close beard for all of my adult life,.. and don't know if I can shave clean to allow for tape!

I do believe that by itself, a nasal pillow would be tolerable as far as comfort goes, if I could just keep my tongue from falling backwards.

Has anyone got any suggestions? I feel like I'm losing years off my life everyday I go with seemingly no sleep. I've researched on line and did find a mouthpiece by "nosebreathe.com" that looks like it would solve my tongue issues. I did some searching on here and only found a few folks that said they had success with it, which is why I'm reluctant to spend 300 bucks for the "heavy nose breather" version.

Any advice would be greatly appreciated.

Marc

Welcome to the forum. Please add your equipment to your Profile so we can see at a glance what you are using.
See mine at the bottom of my reply here. It helps us help you better.
Here is how to add your equipment. wiki/index.php/Registering_Equipment_in_User_Profile

Mask comfort, mouth breathing and leaks are the most difficult part of this therapy.

Which chin strap did you try? There are many different models. Several forum members are able to get excellent results with the PapCap when other chin straps have failed.
http://www.pur-sleep.com/content/?id=44

If you can practice keeping your tongue in the roof of your mouth during the day you might create the habit of keeping it there during the night and thus block the exit of air out the mouth if it drops open.

Of course full face masks are an option. Most of them can be used side sleeping. Sometimes made a little easier with a change in bed pillows to something that allows for placement of the mask without being squished into the bed pillow. Facial hair does present a little more problem but many members have been successful with various full face masks and still keep the beard or goatee. I can't help with ideas along those lines but I suspect the guys that can will offer their ideas.

There is a mask trial program that many members have used to check out a new mask without spending a lot of money. $14 covers shipping both ways and you can try a mask for a week.
http://www.cpaplibrary.com/mask-trials.html

Finally lets see what machine you are using. If you are lucky you have a machine that gathers a lot of data and we can use software to see exactly how much the mouth breathing is impacting your therapy as it shows up as a huge leak.

Morning Marc
Have a look at an Respcare/Innomed Hybrid...........it has a mouth piece plus pillows for your nose. I use one and sleep on my side with no problems. It is considered a full face mask but has no bar over your nose, I can wear my glasses with ease.
Go to the cpap.com site and browse through the masks to see what you would like, then order from your supplier or from cpap.com. When you say you don't want to pay $300 for a mask...I am assuming you are also in Canada, you don't have to buy in Canada...we are way too expensive. :
Cheers and welcome to the forum, you have come to the best place to answer any questions that you have.
Nan

Pugsy wrote:Welcome to the forum. Please add your equipment to your Profile so we can see at a glance what you are using.
See mine at the bottom of my reply here. It helps us help you better.
Here is how to add your equipment. wiki/index.php/Registering_Equipment_in_User_Profile

Mask comfort, mouth breathing and leaks are the most difficult part of this therapy.

Which chin strap did you try? There are many different models. Several forum members are able to get excellent results with the PapCap when other chin straps have failed.
http://www.pur-sleep.com/content/?id=44

If you can practice keeping your tongue in the roof of your mouth during the day you might create the habit of keeping it there during the night and thus block the exit of air out the mouth if it drops open.

Of course full face masks are an option. Most of them can be used side sleeping. Sometimes made a little easier with a change in bed pillows to something that allows for placement of the mask without being squished into the bed pillow. Facial hair does present a little more problem but many members have been successful with various full face masks and still keep the beard or goatee. I can't help with ideas along those lines but I suspect the guys that can will offer their ideas.

There is a mask trial program that many members have used to check out a new mask without spending a lot of money. $14 covers shipping both ways and you can try a mask for a week.
http://www.cpaplibrary.com/mask-trials.html

Finally lets see what machine you are using. If you are lucky you have a machine that gathers a lot of data and we can use software to see exactly how much the mouth breathing is impacting your therapy as it shows up as a huge leak.

I went to add the equipment to my profile. I believe the cpap machine is correct that I chose, although I'm not sure what the "EPR" signifies. The humdifier is built in to the unit, i.e., it just snaps onto the cpap piece. The chin strap I'm using is made by Respironics,...I'm not sure of the model, I ordered it off Amazon.

The chin strap link you supplied looks promising, although I still wonder if the same thing would happen as soon as I fall asleep and my tongue relaxes. Perhaps it would be more comfortable. My current chin strap certainly holds my mouth closed, but I have to keep it VERY tight, which after a couple of hours feels terribly uncomfortable. Moreover, what's the point of wearing it when after my tongue falls back, "game over"!

The ResMed S9 Elite is a full data machine. There is free software available for it.

Look in UncleBob's signature line here for software.
memberlist.php?mode=viewprofile&u=38643

Tutorial on how to use the software here.
http://montfordhouse.com/cpap/resscan_tutorial/

EPR is Exhale Pressure Relief. Each setting is a 1 cm reduction in pressure during exhale to make it easier to exhale against the pressure. Setting of 3 equals a 3 cm reduction in pressure...setting of 2 equals a 2 cm reduction in pressure and so on with setting of 1.

Chin straps of some sort are enough to help some people with the mouth dropping open but some people it is not enough. They either have to maybe tape the mouth shut or change to a full face mask.

Once you get the full data on each night using the software you can see for sure just how much mouth opening is affecting your therapy and take steps to limit it.

nanwilson wrote:Morning Marc
Have a look at an Respcare/Innomed Hybrid...........it has a mouth piece plus pillows for your nose. I use one and sleep on my side with no problems. It is considered a full face mask but has no bar over your nose, I can wear my glasses with ease.
Go to the cpap.com site and browse through the masks to see what you would like, then order from your supplier or from cpap.com. When you say you don't want to pay $300 for a mask...I am assuming you are also in Canada, you don't have to buy in Canada...we are way too expensive. :
Cheers and welcome to the forum, you have come to the best place to answer any questions that you have.
Nan

I had seen that "hybrid" model doing some on line searches. Glad to hear that a "real world" person has had success with it. I am considering that one for sure. The $300.00 I was referring to was for a mouthpiece that keeps your tongue in place, to prevent mouth breathing. It isn't designed for sleeping, but others on here have used it with success. I believe most of the comments on here about it were not positive. It is from the "nosebreathe.com" website. I'm still considering it, as after a lot of research, I now agree that mouth breathing is bad, even with a mask on, and this mouthpiece (if it works) would prevent the tongue from falling back, thus preventing mouth breathing and still allow me to use a nasal pillow instead of a full face mask.

I'm not even sure I can tolerate a full face mask, as I haven't even tried one yet. I plan on swapping my nasal pillow for a full face mask tomorrow. My medical supplier said I could 30 days to find one I like. I'm also quite sure that they won't have something like the above mentioned "hybrid" model for me to choose from. They seem to be a supplier for the ResMed stuff, so likely I'll have to choose one of their models, unless of course I want to come out of pocket.

All of this and at this point I tend to believe that IF I could keep my darn tongue from falling back into my throat, perhaps I wouldn't need a cpap at all. Oh yeah, I still have my tonsils and my adenoids, so that's another thing that I think could help,.. if I got them taken out to "make more room back there" , and yet the docs never even considered that, or even asked about that.

Oh well, one things for sure,.. the only way my sleep could get any worse lately would be for me to simply stay awake all night, on purpose!

Thanks to you guys for listening,
Marc

I have had the same problem since starting xpap therapy 13 months ago. Desperate for a solution, last night I rummaged around and found an old "boil and bite" mouthpiece that I purchased prior to starting xpap and used it in conjunction with my chin strap and Swift LT. Amazingly, my AHI last night was 0.6, my lowest ever. I'm hoping it wasn't just another anomaly. Try it; you might like it . You can buy a "boil and bite" for about $25, so you don't have to invest a lot.

I have facial hair but still use tape--2" 3M Micropore/Rescare. I find that if I pucker my lips a bit while applying with some pressure, it sticks.

Pugsy wrote:The ResMed S9 Elite is a full data machine. There is free software available for it.

Look in UncleBob's signature line here for software.
memberlist.php?mode=viewprofile&u=38643

Tutorial on how to use the software here.
http://montfordhouse.com/cpap/resscan_tutorial/

EPR is Exhale Pressure Relief. Each setting is a 1 cm reduction in pressure during exhale to make it easier to exhale against the pressure. Setting of 3 equals a 3 cm reduction in pressure...setting of 2 equals a 2 cm reduction in pressure and so on with setting of 1.

Chin straps of some sort are enough to help some people with the mouth dropping open but some people it is not enough. They either have to maybe tape the mouth shut or change to a full face mask.

Once you get the full data on each night using the software you can see for sure just how much mouth opening is affecting your therapy and take steps to limit it.

I tried to download the software from the link at the bottom of the page (after clicking the link you supplied), only, when I tried to install, it said it was corrupt.

Do I have to purchase this software, or are there other free downloads out there? Also, looking on the back of the S9, I don't see where I can upload the data to my pc. I do see a multi pin out, not sure what that is. Is there some sort of usb adaptor available?

If you have an S9, there is a data card on back of the unit that pops out. Data card into the smart card slot on your computer. Open ResScan software, start your patient file, and download data from smart card.
I used Uncle Bob's link to software about 3 months ago and had no problems. Maybe someone else can help with that.
I had leaks with chin strap. I found I have to tape my mouth. I use Nexcare paper tape.

Uncle Bob's link is all that I know of. The software is not available to purchase unless doctor writes a RX for it.

If install attempt said corrupt file...throw those files in the trash bin and download again from the same place.
Perhaps a little blip in the download process. It can happen and when it does the setup files get messed up and won't install.
Pretty much all the ResMed users here with the software have used that link.

You can also use SleepyHead. Same data presented visually a little different if you just can't get ResScan to install.
http://sourceforge.net/projects/sleepyhead/

Pugsy wrote:Uncle Bob's link is all that I know of. The software is not available to purchase unless doctor writes a RX for it.

If install attempt said corrupt file...throw those files in the trash bin and download again from the same place.
Perhaps a little blip in the download process. It can happen and when it does the setup files get messed up and won't install.
Pretty much all the ResMed users here with the software have used that link.

You can also use SleepyHead. Same data presented visually a little different if you just can't get ResScan to install.
http://sourceforge.net/projects/sleepyhead/

Yep, that did it. 2nd time around the download was fine, as well as the install. Question though:

I uploaded the data card into the software, and the only info avail. is the "statistics" and the "summary graphs",... is that normal? Also, is there a way I can somehow post a screen shot of the above info? If so, please explain how, ...sorry, I'm computer savvy for the most part, but I've never done any "screen shots",... just seen where others have done them on different forums.

Thanks

The machine has to be set to gather full data and not just summary data. I don't use your machine so I can't tell you exactly which setting. Something in the clinical menu setup and turning Sleep Quality ON. Also must choose all detail data in the download process as it defaults to summary data.

Once you can get the full details and not just summary (someone that uses your machine can give specific steps if you can't get it figured out) you can then post an image of the report. I just use screen shots.

Here is how I do it.
Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.
Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

Pugsy wrote:The machine has to be set to gather full data and not just summary data. I don't use your machine so I can't tell you exactly which setting. Something in the clinical menu setup and turning Sleep Quality ON. Also must choose all detail data in the download process as it defaults to summary data.

Once you can get the full details and not just summary (someone that uses your machine can give specific steps if you can't get it figured out) you can then post an image of the report. I just use screen shots.

Here is how I do it.
Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.
Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

Thanks! I'll try to get this all sorted out and post on here possibly tomorrow ( IF I get it figured out of course).

Marc

[quote="Pugsy"]The machine has to be set to gather full data and not just summary data. I don't use your machine so I can't tell you exactly which setting. Something in the clinical menu setup and turning Sleep Quality ON. Also must choose all detail data in the download process as it defaults to summary data.

Well, I looked through the menu on the S9 Elite, and could see no where to set the data to "full". I even had to Google how to even get into the advanced menu, but as I said, nothing there.

Can any other S9 Elite owners help with this?