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Permalink Reply by Dave on January 14, 2009 at 4:00pm

It can be overwhelming. You have to deal with one issue at time, but off the top of my head.

1) Talk to your doctor and mention that you wake up with your mouth very dry and think you are doing mouth breathing. The same thing happened to me and I lived with it for a year because of negligent doctor....use the community here to quicken the pace to success.....he should recommend either a full-face mask (i use mirage quattro - http://www.resmed.com/en-us/products/masks/mirage_quattro_full_face... ) or a chin strap to keep your mouth closed. I found the chin strap uncomfortable, but others like it.....sometimes you need to try things for yourself.....I would love to use nasal pillows/chin-strap, but doesn't work well for me....maybe will try again in future.
- With any mask, the most important thing is seal....everyone's face is different, so what's great for me, might not work at all for you. It's best to get fitted in an office where they have about 10 different masks all in different sizes to find what's the best for your face

2) Learn about monitoring your progress via software. You can see if you were leaking last night and how many apnea events you have. Most people find that results in the sleep study lab are very different from those at home and pressures often need to be changed/tweaked.

Most importantly, don't give up....keep asking questions......until you understand the working pieces and why/how people have different viewpoints.

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Permalink Reply by Joel Kehle on January 14, 2009 at 4:11pm

Quick question - why would you "love to us nasal pillows/chin-strap..." If it doesn't work for you, what's the appeal?

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Permalink Reply by sleepycarol on January 14, 2009 at 7:12pm

Which machine do you have?

Can you tell me the full name written on machine? Apria is known for providing the most basic machines there are.

It takes time to adjust -- might even be a month or so before you will feel rested. Many factors are involved in this. Your sense of smell (new plastic smells, etc.) the sense of touch (you have something attached to your face) the sense of hearing (the whirr of your machine), etc. All are affected by this new way of sleeping.

Give your self some time to adjust. Be kind to yourself.

I know this is going to sound goofy and some may slam me -- but here goes -- tape your mouth or use Polident strips to keep your mouth closed. If you decide to tape -- use the paper tape as it is easy on the lips, put chapstick on first and then the tape folding over the two ends so that you can peel it off in a hurry if you have to. A chin strap usually does not prevent the lips from parting slightly and air escaping that way. Many find that a cinched down chin strap is painful and causes problems with the jaw area. The tape is easier and seems to work for many. The sleep lab may not have caught it since you were sleeping in an unnatural place and somewhat tense. You may not have been totally relaxed where now in your own bed your body is relaxing more as you get to the deeper sleep.

If you don't want to use tape a few I know have used the wide self-adhering tape and put it around their mouth and tie it off in the back.

You might want to try some aromatherapy as well to help you transition. If you feel you must sleep with the machine for as long as you can stand it and then take it off for a few hours off sleep. Gradually increase the length you are using the machine.

Good luck and please keep asking questions.

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Permalink Reply by Dave D. on January 17, 2009 at 11:10pm

Joel,

Basically it is just not normal to have a leaf blower on your face when you sleep. No matter how bad your OSA is or how great the machine is, it is just going to take time to get used to it. One thing you didn't mention was how bad your OSA was. Severe sleep apnea (>= 30 AHI) that is untreated carries a five-fold chance of night time heart attack or stroke. It is well worth the time to get used to it. That is from the cardiovascular literature, not the sleep medicine literature.

I can't overstress the need to stay on your sleep specialist to help you. There is nothing worse than a patient that comes in for a 3 month follow-up with only a few days on the machine with a complaint that they "just couldn't get used to it", but they never called for help. There are many options, masks, machines, pressures, pillows, medications that can be helpful. Unfortunately many of the sleep labs these days don't have the ability to do any follow-up clinics and, thus, turn everything over to the DME.

Keep trying, and keep us up-to-date on how you're doing.

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Permalink Reply by Jess on January 18, 2009 at 5:33pm

Joel, I can clearly remember my frustrations when beginning CPAP therapy. I would tear my headgear off every night by about 3am at the latest. It took a couple of weeks using the equipment every night before I could use it all night and it was 3+ weeks before I really began to feel comfortable wearing it. Eventually I got to where I couldn't imagine going to sleep at night without it. Within a few months I was feeling better than I had felt in years. It was totally worth fighting through the frustration.

Listen to the folks here and work with your doctor. Perhaps you can find better fitting equipment that you are more comfortable with but above all else stick with it. You will be happy you did.

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Permalink Reply by Rock Conner RRT on January 19, 2009 at 8:07am

Hi Joel:

Carol, Dave & Jess make good points. CPAP is hard to get used to to for most of us. Don't beat yourself up if it takes a while. I reckon the two standard deviation learning curve window runs two nights to two months, with the mean somewhere around two weeks. Do the work. You & those around you will benefit.

Rock

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Permalink Reply by Val Kilburn on January 23, 2009 at 8:43pm

I don't know if this will help and I have some issues as well. I was diagnosed with sleep apnea about 8 months ago, have been "trying" to get used to the cpap all this time, and don't think I've gone through an entire night without taking it off and throwing it accross the room. I too am a mouth breather and if I don't bunch up my pillow under my chin to keep my mouth closed, I make more noise sleeping with my mouth open and the cpap going than i do without the whole apparatus. I too went through 2 sleep studies and am scheduled to go through a third when I return to Canada in the spring.

The cpap is not helping me so far. I am wondering if there is a chin strap available on-line somewhere and would it help the mouth breathing. I know the "dry mouth" is from mouth breathing and not having any humidity going. When I turn on the humidity - even a tiny bit - I wake up in the middle of the night with water going up my nose and practically drowning..............................

I agree with Joel, so far using the cpap is worse than the initial problem.

Thanks!

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Permalink Reply by sleepycarol on January 23, 2009 at 9:56pm

Val,

Have you thought about using a full face mask? That would solve the issue with the mouth breathing. For many chin straps do not work as they still allow the mouth to part slightly and leak air. They can also aggravate TMJ and if cinched too tight be downright uncomfortable.

Another solution is to tape you mouth with 2 inch tape -- use the paper tape and fold over the ends so that you have a handy finger grip to pull it off. Polident strips can also be used.

Good luck.

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Permalink Reply by Mike on March 13, 2009 at 2:51am

Joel,

Can you give us an update on how you're doing? I'd hate to have you "fall off the wagon" with your CPAP right out of the gate and give up on it without a real fight.

Mike

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Permalink Reply by Joel Kehle on March 17, 2009 at 5:23pm

Hey Mike - good to hear from you - here's an update:

Well I have enough energy to go back to doing things I haven't done in a long time. In addition to my day job, I've been getting back into being a singer/performer. A fairly dramatic (no pun intended) change in my energy budget.

I'm still not crazy about the machine - it's noisy and I'm a mouth breather.
To get to sleep at night during I'll pop 1/2 an ambien - something that's not a good long term strategy.
I also tried using ear plugs last night.
I'm not sure what to do about the mouth breather problem - the chin strap doesn't really work and leaves marks on my face for about half the day. Also since I spend a good amount of time training to breath in and out of my mouth (singing), I'm not sure that my brain is going to figure out to not do this at night.

It would be great for someone to weigh in on the advantages/disadvantages of a nasal pillow (which I use) vs. the full face mask. The guy I work with at Apria implied that going to a full face mask would be a bad thing but I'm not sure why.

Any thoughts? While my quality of life has improved, I have a feeling I has a ways to go.

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Permalink Reply by Mike on March 17, 2009 at 8:39pm

sounds like you're making solid progress, which is great to hear. granted, you have some way to go, but getting the perfect combination of equipment/supplies is often a long process, and you're well on your way. don't give up!

i don't like the nasal pillows because i find they're unstable in the nostrils and can leak easily when you turn on your side, unless you have a very supportive pillow. on the full face mask, i understand that those are prone to leaking as well under the same circumstances. i'm getting the ResMed Liberty full face mask, which is actually a combination nasal pillow/ mouth cover mask. I'll let you know how I like it when i get it, and you might consider trying it yourself.

Joel Kehle said:

Hey Mike - good to hear from you - here's an update:

Well I have enough energy to go back to doing things I haven't done in a long time. In addition to my day job, I've been getting back into being a singer/performer. A fairly dramatic (no pun intended) change in my energy budget.

I'm still not crazy about the machine - it's noisy and I'm a mouth breather.
To get to sleep at night during I'll pop 1/2 an ambien - something that's not a good long term strategy.
I also tried using ear plugs last night.
I'm not sure what to do about the mouth breather problem - the chin strap doesn't really work and leaves marks on my face for about half the day. Also since I spend a good amount of time training to breath in and out of my mouth (singing), I'm not sure that my brain is going to figure out to not do this at night.

It would be great for someone to weigh in on the advantages/disadvantages of a nasal pillow (which I use) vs. the full face mask. The guy I work with at Apria implied that going to a full face mask would be a bad thing but I'm not sure why.

Any thoughts? While my quality of life has improved, I have a feeling I has a ways to go.

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Permalink Reply by sleepycarol on March 17, 2009 at 9:32pm

If you have the proper size pillows or prongs you shouldn't have much leakage. The trick is finding the nasal pillow or prong interface that works for you. I think it is a shame that almost all DME's give patients one set of the pillows out of a package. Many of the masks that are pillow or prong have more than one size of pillows included and the DME pulls the extra out. If you purchase masks online they typically include all of the sizes in the kit allowing you to try the different sizes out. The extra pillows can then be traded for the size you need so that you may have less expense involved.

Do not be afraid to lab rat your masks to make them work. I know at first when it was suggested that you could get a better fit if you modified your masks I was horrified. Who would want to cut up a mask that costs over a $100 online and even more through a DME? Well after months of searching for my favorite mask I became more open to the suggestion and started doing just that. Masks are made generically and since each and everyone of us have different facial features it is difficult to find one that fits your particular features.

On one mask that I used for awhile I couldn't stand the headgear -- it was an awful contraption thing and so I took the mask apart and used a stocking hat for the headgear. After I did that my leak rate went to almost nothing (allowing for venting of course) and so did my AHI. If I wear that particular mask I use the set up I came up with and not the original headgear.

The mask I use now is my all time favorite and when I do switch mask I don't sleep as well. I use stretchy headbands to stablize it and have the headgear really loose (the headgear is way too big and I have it to the smallest size.) I did leave the original headgear but do not use it to hold the mask on -- just as additional support on the very top of my head. Without the headbands this mask is totally worthless to me since it comes nowhere near fitting me and even sitting perfectly still it slides right off my face/head.

You can always use your old masks as guinea pigs while butchering them so that you don't ruin a good mask -- but the experimenting is worth it in my opinion.

As far as keeping your mouth shut -- have you tried the Polident strips? Take the strips and cut to size and place on lips and moisten and seal. Your lips can be parted easily and if needed to be reglued a lick should do the trick. I have never used this trick but heard it works very well.

You may want to try some herbal supplements at some point if you don't like taking the Ambien. Some of the herbal supplements help with sleep.

Good luck and glad you are hanging in there.

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