Replies to This Discussion

Permalink Reply by Samuel Kaplan on February 25, 2010 at 10:07am

This is not a philosophy. It is an operation fact that works most of the time for me.

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Permalink Reply by Linda Murphy on February 25, 2010 at 10:15am

Ross, keep at it. It does take time. If you have some leakage at the top of the mask near your eyes try a small bandage across the bridge of you nose. Somethimes the shape of your nose may be a problem and adding the bandage makes a difference. It worked for me I hope it helps you.

None of the masks will be perfect but keep trying different little tweeks. I think you should stick with one mask that fits the best and keep trying with that mask.

I took my mask off at night without knowing too. You will get used to it. It does take time. Keep at it. Each night gets better.

Good luck, keep in touch, I know it can be done. I did it.

Linda

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Permalink Reply by 99 on February 25, 2010 at 10:40am

how can a mussion need encoaragement
how about composing a sleep apnea song for us
i beleve we have a song but you can give us compitition
and we can view your work eather a ya or a na

how about a song for the cpap problems and how you sovled or not solved them

how long did you learn to play
spend the same amont of time or even perhaps more on you cpap

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Permalink Reply by Kathleen on February 25, 2010 at 12:03pm

Ross,
Oh, you brought back a lot of memories (ugh).
I am happy that you seem to be determined to lick this adventure in mask adjustments.
I cannot wear any type of nasal mask - after trying quite a few.
Although, according to the "Mask Fit Guide", my favorite was "not for me", I tried and loved the Activa mask - absolutely no leaks. Why? Well, it sorta just leaps onto your face and 'sucks' (suction). Some are bothered by a slight adjustment it makes - I don't notice it. I'm a side sleeper, and the Activa works just great. Best part is that it's not necessary to tighten it past the comfort level. Maybe you've already tried it and discarded it? What is perfect for one can be useless to another. Some people who find a good mask but don't like the headgear will 'modify' the straps, or add one where needed.

It sounds as if you have an understanding DME! Not always the case. My first one told me which CPAP machine was 'good enough' for me! Contrary to written Rx from doctor. I fired them and bought my own machine elsewhere, not wanting to go through a dictatorship again.
Having a good supplier is half the battle.

Oh, I did have some success with the 'comfort lite'; most likely because it didn't touch my nose.

One recommendation for getting part of your mask to 'stick' in place is Tincture of Betadyne, It's that ruddy-colored liquid that is used to prep (sterilize) you prior to surgery. It is tacky when dry. Be VERY careful - don't use too much if you do, and it's possible to get a rash, so try it somewhere other than around your eyes first. I think the bandaid idea is a good one.

Now, get this: I actually tape my mouth shut, so that I'm forced to breathe from my nose. My husband is always disappointed when I take off the tape, ha ha. Whatever works for you is great.

This is a good place for you to be. I'll be thinking of you, and wish you the very best of luck in finding THE mask of your dreams. I was so frustrated in the beginning, I threatened to have a 'plug' put in my airway. Sheer laziness, and ran out of ideas. But, I won in the end. You will also.

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Permalink Reply by Vickie Reynolds on February 25, 2010 at 12:07pm

I am here to encourage you - I have only recently been diagnosed w/sleep apnea and I have been on CPAP since early January - I too had/have issues and it does take some work - I've got the attitude "IT WILL WORK' - keep working w/your DME provider - I know mine here in Coeur d' Alene Idaho is awesome - I continuely "bug" them but they are wonderful and say this is quite normal. Afterall, we have been w/out a mask for all these years and it will take awhile - so if you can, keep on keepin' on....Vickie

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Permalink Reply by Eric James Bennett on February 25, 2010 at 12:40pm

I have been at it over a year and still do not get all the way through the night.. Have you tried the pillow mask? It feeds overe the head and has like a canula that is put into either nostril? I also discovered that I did not have enough moisture in the air causing it hard to breath and my nose would stop up and I would remove the mask without realizing it.. If you want to try the pillow let me know as I have an extra one. They are really great at the VA when you need something.. Take care and never give up...

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Permalink Reply by Ross Plotkin on February 25, 2010 at 1:00pm

Thanks so much to everyone for all your help! This is just an embarrassment of riches. Really, I wasn't expecting anything like this degree of support. I must offer my deepest gratitude to each and every person who took time to offer their assistance.

I have had some success with the Comfort Lite 2, and will try the Band-Aid and tincture of Betadyne ideas to seal the leaks on my Mirage Vista. The next mask my DME is shipping me is the Full Life by Respironics. This is because he suggests that my habit of waking up dry-mouthed when not wearing the mask may mean I'm a mouth breather, and therefore the only mask style that would work for me is full-face. He says the Full Life has the additional benefit of allowing me to put on and remove my eyeglasses.

Any suggestions beyond the above as to how people may have trained themselves to keep their mouth shut? If I were to practice with the Vista or Comfort Lite 2 more, but were to open my mouth during the night so as to render the mask partially or entirely useless, would such be seen on the APAP data?

At the very least, I'm intending to be diligent by at least starting each night wearing a mask, and (since I now have many different masks with which to experiment) keeping a sleep guide as to what I'm wearing when.

My graciousness to everyone!
Ross

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Permalink Reply by Kathleen on February 25, 2010 at 1:13pm

Ross,

Are you using a humidifier? That could help some with the dry mouth.

Also, there are several products in the drug stores for dry mouth Beta________ mouth rinse, sprays, probably even toothpaste. You can also put a vapor barrier on the inside of your cheeks.

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Permalink Reply by susan mccord on February 25, 2010 at 1:18pm

Hi Ross--.....Okay, Hercules!! :-)

#1. You're not being melodramatic. Stop talking to people who say you are.

#2. Your "demands" for a mask that fits well and works for you are not too high. They're common among apnea patients and they're CRITICAL. If you're gonna spend a third of your life wearing the darn thing, which we all are, you have a right, and a responsibility, to find THE very best one for YOU. Period.

(I've been through, I think, 8 different masks since the end of July--some I really liked but they leaked, some I just plain couldn't get comfortable in, and some just sucked in general).

#3. Your plan of trying them out sensibly and methodically makes a LOT of sense to me. I know it's frustrating. It truly is. But the good news is that there ARE a lot of masks available. Even though it's confusing at first, you have tons of options. And you WILL find one that works really well for you.

#4. 'Ya just have to trust your own gut sense of what works and what doesn't and probably isn't going to regardless. I hope you have a good DME who's working with you. That's a top priority for mask-finding. A good DME rep will be as interested in finding one that works well as you are.

#5. I'm REALLY glad you've come to SleepGuide. It's a great place to be!! If it weren't for the people on this site, I'd have been off babbling in a corner a long time ago. You'll get all the support and information you ask for on here, and maybe some you DIDN'T ask for!!

#6. SEE #5.!!!!!

Be gentle with yourself, my friend. You're gonna be okay. And you WILL get some good sleep. It's the process of getting the treatment options dialed in that's so frustrating for some of us.

Stay tuned. There are a LOT of people on SG ready, willing, and able to help you. And you'll have a lot to give back in return. I guarantee it!!

Susan McCord :-)

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Permalink Reply by susan mccord on February 25, 2010 at 1:25pm

Ross, just an aside--no one has EVER had any luck getting me to shut my mouth!! That's why I wear a full face mask!!! My newest one is a FitLife, which sounds similar to the one you have on the way but mine covers eyes, nose, mouth, and the way it fits, it actually DOES help keep my mouth closed. (Maybe my DME is trying to tell me something! Hmmmmmm........!) lol

Susan McCord :-D

susan mccord said:

Hi Ross--.....Okay, Hercules!! :-)

#1. You're not being melodramatic. Stop talking to people who say you are.

#2. Your "demands" for a mask that fits well and works for you are not too high. They're common among apnea patients and they're CRITICAL. If you're gonna spend a third of your life wearing the darn thing, which we all are, you have a right, and a responsibility, to find THE very best one for YOU. Period.

(I've been through, I think, 8 different masks since the end of July--some I really liked but they leaked, some I just plain couldn't get comfortable in, and some just sucked in general).

#3. Your plan of trying them out sensibly and methodically makes a LOT of sense to me. I know it's frustrating. It truly is. But the good news is that there ARE a lot of masks available. Even though it's confusing at first, you have tons of options. And you WILL find one that works really well for you.

#4. 'Ya just have to trust your own gut sense of what works and what doesn't and probably isn't going to regardless. I hope you have a good DME who's working with you. That's a top priority for mask-finding. A good DME rep will be as interested in finding one that works well as you are.

#5. I'm REALLY glad you've come to SleepGuide. It's a great place to be!! If it weren't for the people on this site, I'd have been off babbling in a corner a long time ago. You'll get all the support and information you ask for on here, and maybe some you DIDN'T ask for!!

#6. SEE #5.!!!!!

Be gentle with yourself, my friend. You're gonna be okay. And you WILL get some good sleep. It's the process of getting the treatment options dialed in that's so frustrating for some of us.

Stay tuned. There are a LOT of people on SG ready, willing, and able to help you. And you'll have a lot to give back in return. I guarantee it!!

Susan McCord :-)

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Permalink Reply by 99 on February 25, 2010 at 1:44pm

i think i nearly closed your mouth by a provokive remark only once

susan mccord said:

Ross, just an aside--no one has EVER had any luck getting me to shut my mouth!! That's why I wear a full face mask!!! My newest one is a FitLife, which sounds similar to the one you have on the way but mine covers eyes, nose, mouth, and the way it fits, it actually DOES help keep my mouth closed. (Maybe my DME is trying to tell me something! Hmmmmmm........!) lol

Susan McCord :-D

susan mccord said:

Hi Ross--.....Okay, Hercules!! :-)

#1. You're not being melodramatic. Stop talking to people who say you are.

#2. Your "demands" for a mask that fits well and works for you are not too high. They're common among apnea patients and they're CRITICAL. If you're gonna spend a third of your life wearing the darn thing, which we all are, you have a right, and a responsibility, to find THE very best one for YOU. Period.

(I've been through, I think, 8 different masks since the end of July--some I really liked but they leaked, some I just plain couldn't get comfortable in, and some just sucked in general).

#3. Your plan of trying them out sensibly and methodically makes a LOT of sense to me. I know it's frustrating. It truly is. But the good news is that there ARE a lot of masks available. Even though it's confusing at first, you have tons of options. And you WILL find one that works really well for you.

#4. 'Ya just have to trust your own gut sense of what works and what doesn't and probably isn't going to regardless. I hope you have a good DME who's working with you. That's a top priority for mask-finding. A good DME rep will be as interested in finding one that works well as you are.

#5. I'm REALLY glad you've come to SleepGuide. It's a great place to be!! If it weren't for the people on this site, I'd have been off babbling in a corner a long time ago. You'll get all the support and information you ask for on here, and maybe some you DIDN'T ask for!!

#6. SEE #5.!!!!!

Be gentle with yourself, my friend. You're gonna be okay. And you WILL get some good sleep. It's the process of getting the treatment options dialed in that's so frustrating for some of us.

Stay tuned. There are a LOT of people on SG ready, willing, and able to help you. And you'll have a lot to give back in return. I guarantee it!!

Susan McCord :-)

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Permalink Reply by susan mccord on February 25, 2010 at 1:45pm

Well, there 'ya go! Whatever works, I say...........!!!

McCord :-)

Samuel Kaplan said:

This may sound crazy, but I do the opposite of what I think will work. If the mask leaks, I loosen it a bit. If there is a sudden leak from the right, I adjust it to the left.

I've been using CPAP for 15 years and I hate everytime I put it on. But it works, so I do it.

Good luck.

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