I purpose the startup of a Think TANK. To End MOUTH Leaking

Stryker5777 · Post by **Stryker5777** » Tue Jul 18, 2006 6:28 pm

I wanted to see how we stood on possibly starting a project. I purpose a think tank whose objective is to end the problem of mouth leakage (if ultimately successful could address other XPAP issues as well) that plagues so many of us despite the continued patience and unending torment of:

MOUTH TAPING (duct tape, water proof tape, 3M tape)
chin straps
FULL-FACE masks
Hybrid masks.
DIY tongue devices
nexicare dams
Oracle 451 mask reinvention.

This seems like a great many's problem with XPAP. Yet while these methods work for some they seem hit and miss at the very best. Also they are very difficult to maintain and implement.

Why you might ask? Well, despite everyone's great advice and help, that has been awesome in helping me stay with XPAP for almost two years now, I have been unable to conquer this problem and it has majorly impacted my ability to stay sleep and feel rested the next morning. For a great while I wasn't even sure this was the problem either, however now I'm confident it is and still continues to be a problem for me. I have personally been trying a great many and will despite this continue to try new things till I fix it. However, there are so many other there that are just begining to realize they even have this problem..!!!! Let alone can piece together the bits and details of info to tackle this difficult problem!

And I'm sure there's a great many out there that are also having the same problem, which I notice reoccuring themed posts on this forum from , constantly. In part, I'm starting this for all those out there who suffer from poor sleep, because of this problem, but who won't otherwise come forward.

GOAL: Develop or cause the development of a single mouth piece that completely stops mouth leakage during XPAP treatment and is easy to make and use for everyone, or extremely affordable.

Sub-goals:
Provide support and development of other methods until we can develop such a device.

Catagorize and rate other methods, materials and ideas and provide an anaylsis of differnt brands and manufacturers, and cost.

Keep this information in one easy to access spot unlike searching through the scattered topics of this forum (& FREE of cost) that will aid anyone that is looking for this data to quickly find and secure the neccessary info.

Help newbies to this idea or those who think they maybe suffering from mouth leakage, but weren't told so during their sleep studies.

Who: I'm asking for anyone that would be willing to address a difficult problem with creative thinking skills in a positive manner. People's expertise and professionals would be greatly appreciated tho.

Structure & Format:

Meet regularly in a open format either on this thread or another forum to discuss and brainstorm and share info.

Publishing:

I was thinking of opening a website that could be FREELY accessed by everyone and shared openly. Discussion, planning and development could be addressed both here and there.

Conclusion: I ask that anyone this is on this forum reading this right now should consider what I'm asking here. As this could help a great many of people both just starting OSA treatment and those who are seasoned vets in this area.

IF your game post a reply or PM me and let me know.

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CPAPopedia Keywords Contained In This Post (Click For Definition): oracle

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CPAPopedia Keywords Contained In This Post (Click For Definition): oracle

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CPAPopedia Keywords Contained In This Post (Click For Definition): oracle

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CPAPopedia Keywords Contained In This Post (Click For Definition): oracle

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CPAPopedia Keywords Contained In This Post (Click For Definition): oracle

sleeplesssue · Post by **sleeplesssue** » Tue Jul 18, 2006 7:04 pm

I'd participate. i have this problem. some nights i do better than others. I will NOT tape my mouth shut, don't want to wear a full face mask. I wear a band under my chin. It's nice and cozy in the winter, but hot in the Summer. I also have a small pillow that I sleep with that is full of little foam beads. It adjusts to the countours of my head and neck, providing support for my neck, and I can rest my chin into it to help keep my mouth shut. But I need more solutions than that. I sleep on my back part of the time because of back pain. Then I have a problem. I will NOT tape my mouth. My skin is sensitive (when I pull the tape off it bruises me or tears skin off) and I'm afraid the power will go out and my cpcp will be off during thunderstorm season. I can't afford a battery backup.

Stryker5777 · Post by **Stryker5777** » Wed Jul 19, 2006 6:15 pm

sleeplesssue,

I appreciate the pledge of support. I'm confident that there will be more to come who will join our group. People working together toward tackling any problem never fail, they almost always grow stronger together.

With almost 90 (at last count) reads it definitely is a issue thats on alot of people's minds, that they would like to see addressed. There's a lot of smart people on this forum and I think that eventually that the problems we all face right now with XPAP therapy will be a thing of the past.

Definitely a positive effect, if at the very least, of my post has been the encouragement of discussion on this particular topic, that I'm seeing in other threads on this forum. Let's continue the efforts to solve these all sleep disorder problems together.

Humbly yours,

Stryker5777

dsm · Post by **dsm** » Thu Jul 20, 2006 12:21 am

Stryker,

A worthy cause. I can personally attest to the effort I have put into trying to come up with a solution to this. If you succeed you deserve to be recognized as a true innovator and pioneer of xPAP there will be many ready to praise the innovator that can achieve this.

Some factors that I have observed that for me scuttled my own efforts include ...
1) Searching out & spending big $s on mouth devices that would help me lessen 'mouth breathing' only to conclude I had spent good money to no effect.

2) Trying just about all known chinstraps in creation

3) Creating moulded devices & hacking Oracle masks in order to invent a mouth sealing device

4) Buying all types & kinds of masks in the search for mask & mouth nirvana.

5) Believing after a year that I had learned to keep mouth shut naturally & on switching to a nasal pillows mask thought I had al last achieved the impossible only to observed a reversion back to regular mouth breathing & snake talking (the hiss factor ) after about a week on nasal pillows.

I have repeated this switching from f/f to nasal pillows experiment with the same results each time. Very deflating. At one point I had thought I would never use a f/f mask again, but my f/f mask is my safety line.

****************

Result 5 really was a deflating experience.

Anyway, I am sure there are answers we just need people like you to keep prodding & searching & others like myself who can perhaps help point out what doesn't work.

Cheers

DSM

OwlCreekObserver · Post by **OwlCreekObserver** » Thu Jul 20, 2006 5:27 am

As I sit here this morning with a raw spot on my cheek from last night's taping, I am very interested in this topic. I can't say that I'd have much of anything to offer in the way of a solution -- I think I've pretty much tried them all -- but I would certainly follow any thread that develops.

OCO

oldgearhead · Post by **oldgearhead** » Thu Jul 20, 2006 5:27 am

After 5 years, 5 chin straps, and miles of Durapore tape, I have found my answer;
https://www.cpap.com/productpage-advanced.php?PNum=2204

oldgearhead · Post by **oldgearhead** » Thu Jul 20, 2006 5:36 am

I have noticed, it is very difficult for me to open my mouth with two different face masks: The Hybrid (without the chin flap) and the UMFF. So I'm thinking; Has anyone ever tried just a simple strap above the chin so that pressure is applied in the same place as a UMFF?

roster · Post by **roster** » Thu Jul 20, 2006 5:58 am

[quote="dsm"]Stryker,

1) Searching out & spending big $s on mouth devices that would help me lessen 'mouth breathing' only to conclude I had spent good money to no effect.

Stryker5777 · Post by **Stryker5777** » Thu Jul 20, 2006 11:35 pm

[quote="dsm"]

5) Believing after a year that I had learned to keep mouth shut naturally & on switching to a nasal pillows mask thought I had al last achieved the impossible only to observed a reversion back to regular mouth breathing & snake talking (the hiss factor ) after about a week on nasal pillows.

I have repeated this switching from f/f to nasal pillows experiment with the same results each time. Very deflating. At one point I had thought I would never use a f/f mask again, but my f/f mask is my safety line.

****************

Result 5 really was a deflating experience.

Anyway, I am sure there are answers we just need people like you to keep prodding & searching & others like myself who can perhaps help point out what doesn't work.

Cheers

DSM

roster · Post by **roster** » Fri Jul 21, 2006 5:52 am

[quote="Stryker5777"]

Though all of this makes me wonder why in the research on sleep apnea , when long term studies were conducted, they didn't realize this problem? at least in some people? Standard therapy by the medical community, is accepted as CPAP @ a set pressure delivered via a nasal interface, other interfaces are not as well studied. How could they have missed this one? It makes me wonder who was asleep at the wheel on this one (little sleep joke there too. ) I don't remember reading about this or my sleep doctor even mentioning it.

My theory, which I'm beginning to see more and more circumstantial evidence of is that this problem is almost as bad as the apnea itself. When the tongue relaxes (as do other tissues in the throat and mouth during sleep) in someone who has apnea thats on XPAP therapy air blows over the top of it into a person's mouth. In essense your not really mouth breathing your simply losing therapy air that should be going to the blockage that's lower in the airway passage. Also its a rather arousing feeling for most people that causes a person to wake up briefly, maybe correct the problem by repositioning their tongue and then go back to sleep. This probably happens almost as much as apneas or maybe even compounded onto the untreated apneas causing a very unrestful night, indeed.

Stryker5777

Stryker5777 · Post by **Stryker5777** » Mon Jul 31, 2006 5:51 pm

On going discussion is about this very topic that tops CPAP talk.com. Hopefully there are more solutions coming from those who are posting. How are we doing on that Hybird mask? I find that very interesting in design. Would someone be willing to post a encore report that illustrates its effect on mask leakage and AHI?..

Some of you guys have already pledged your support. I recommend to all that have pledged or are thinking of pledging PLEASE bookmark this thread, so that you may refer back to it from time to time.

We also are still looking for those who would like to join.

I've started a yahoo group that will be used in conjuction with this thread. If you've already pledged support or want to please join this group by sending an email:

xpap_TTP-subscribe@yahoogroups.com

This way I will know that you still want to join, and also this will be used for alot of the inner comunication that happens in the think tank. You may not start recieveing emails from me yet as I may have to add a few things to it. However you guys should be able to start sending and recieving on it if you'd like... I'll be posting rules and guidlines for us to get started soon enough.

Stryker5777

Muddpa · Post by **Muddpa** » Mon Jul 31, 2006 7:13 pm

Hi,
Count me in. I have been a cpap user for four years (two sleep studies, two cpap machines, one with c-flex). I have try more mask than you I care to think about. My mouth leaks just started getting worst in the last six months. The only thing I can think of is my weight gain (15 lbs).

I am trying now to get a Restar pro m.

Muddpa

Stryker5777 · Post by **Stryker5777** » Fri Aug 04, 2006 11:53 pm

Muddpa,

Thanks for your pledge of support. Don't forget to send an email to the subscribe yahoo group address, so you can recieve communications between others in the group.

I think weight increase maybe a factor. Does anyone out there have experience with this??.

Nasal Congestion I think is a big factor aswell. Air does seem to take the path of least resistance to equalize pressure. Incoming air pressure tends to push out on top of the relaxed tongue quite easily. Efforts to overcome this problem with tongue control haven't worked for me as of yet.

Mudda, have you tried full face masks, yet? I'm curious on what your experience has been with them.

Stryker5777

Stryker5777 · Post by **Stryker5777** » Sat Aug 05, 2006 12:02 am

Oh yeah, I almost forgot here's the link so you guys can check it out:

http://health.groups.yahoo.com/group/xpap_TTP/

Still a work in progress tho. More updates to come...

Stryker5777

sleeplesssue · Post by **sleeplesssue** » Sat Aug 05, 2006 10:35 am

I think I'm headed for a FF mask, but I so love this little mask I have. There are no pressure points and very few leaks throughout the night. I get really tired of how DRY my nose and mouth get every night. and how stuffed up my sinuses get VS how they don't get stuffed when I sleep w/o my CPAP. I have dysfunction of my vocal cords and difficulty swallowing, which doesn't help at all. My neck is still in spasm from a recent fall. I didn't reinjure the discs and my metal plate and everything are still fine in there. but I have to position my head "just so" to get pain relief and then my mouth hangs wide open after I go to sleep. the chin strap isn't working for my anymore. Last night I tried putting a large, square bandaid over my mouth and coated the outside of the bandaid with vaseline to make it more airproof. It helped, but didn't get the job done. I'm non compliant again. I can't make the air quit coming out of my mouth instead of opening my airway. I also have pain in my chest wall after sleeping with the CPAP. I have lost a lot of weight. my blood pressure is back to normal, and even too low now. My pulse has even slowed down to where i feel half dead sometimes. I've just been diagnosed with MS. I have thought of getting a mouth gaurd for teeth grinding during sleep. I used to wear one, because I do grind my teeth. I think those are designed to not close off your airway though. Can't somebody develop a mouth gaurd for teeth grinding that will shut the oropharnyz and leave just the nasopharnyz open? Please?

Machine	Mask

Additional Comments: Looking for the right mask still

I purpose the startup of a Think TANK. To End MOUTH Leaking

I purpose the startup of a Think TANK. To End MOUTH Leaking

I'll try anything I guess