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My follow-up
I've got my 6 week follow-up on thursday and I need to know what I should be asking them. As it stands I can't manage a full night's sleep with my mask. I'm using a full-face and as I'm just about falling asleep my jaw relaxes so much it drops back a little and a leak occurs along the bottom of the mask. MY mouth doesn't really open when I sleep but that action makes a leak which wakes me up. On the few occasions I do get to sleep I normally wakes up after an hour or so and take the mask off.
So what should I be saying to the sleep study people?
So what should I be saying to the sleep study people?
Views: 299
Replies to This Discussion
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Permalink Reply by Phil Green on
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I think you should let them know that you're getting leaks. Maybe they could give you a nasal mask, or perhaps one of the ones that goes into the nostrils.
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Permalink Reply by Crabby Appleton on
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Hi Russ,
I have exactly the same problem. My mouth does fall open and depending on what position I'm in, the mask can slip and leak. It also does help that I have a goatee that messes with the sealing. I was told to use the larger mask with hopes it would "catch" under my chin and give a better fit. I refused to wear the mask for several years because of the claustrophobic problems. I finally gave in and wear it every night. I still feel rotten every morning. I'm sure it's because my breathing is messed up. Because the "levels" a OK, my doc doesn't seem to think I know what I'm talking about. I've been using it for 4-5 years now. I'm about ready to chuck it. That, coupled with the great creases I have all over my neck every morning, make the CPAP a delight. Hope you can get some relief.
Kenny
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Just went through this. Just tell them what you just told us. Maybe you need a smaller mask or a chin strap. Honestly, this is the hardest part of CPAP wear - getting the mask to fit! Keeping the mouth shut! Stopping the leaks! And don't be afraid to speak up if what you get doesn't help. It does take time to get it right but I think you will finally get a good (or better) nights sleep. The problem as I see it is in the follow up - or follow through. They do the study, determine you need x.y.z and they give it to you. Then when you have problems its hard to know who to tell - the tech gets his orders from the doc who ordered the study. Help me out here, techs, I think they can give you a different mask and try to help you learn how to stop some of the leaks, but as far as anything to do with the machine, that has to be a doctors orders i.e. changing the pressure, etc. If you have a good, qualifed doctor who knows what he is doing and you have a good tech, then it will get resolved, but it may take some time. If you have a machine that has the capability of recording your responses that helps greatly as they can tell how compliant you have been - not being compliant can very often be due to mask leakage, mouth opening, etc. Just know that we have all been through this to one degree or another and it does get better. Its sometimes so frustrating and you may want to throw the whole thing out the window - but bottom line is you need this machine!
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Try the Fisher & Paykel FlexiFit HC 407 nasal mask with chin strap. I have been using for 5 yrs & I get 6-7 hrs sleep.
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Permalink Reply by Randy Bray on
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It takes time to train yourself to keep your mouth closed, One of the things you can do is get an elastic chin strap from whomever provides your supplies, those work well to keep your mouth closed. Another idea is to see a dentist that works with sleep medicine clinics to get a "Mandibular Advancement Device" made. It will keep your jaw forward and your mouth closed and you won't have so much of a problem. I tried a full face mask and hated it. I switched to a respironics comfort plus (over nose) and while it took a bit of time, I trained myself to keep my mouth closed while I wore it.
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My mouth does close when I sleep?!
Randy Bray said:It takes time to train yourself to keep your mouth closed, One of the things you can do is get an elastic chin strap from whomever provides your supplies, those work well to keep your mouth closed. Another idea is to see a dentist that works with sleep medicine clinics to get a "Mandibular Advancement Device" made. It will keep your jaw forward and your mouth closed and you won't have so much of a problem. I tried a full face mask and hated it. I switched to a respironics comfort plus (over nose) and while it took a bit of time, I trained myself to keep my mouth closed while I wore it.
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I can certainly empathize with you on your problem. I have a nasal mask but because I am a mouth breather I have to wear a chin strap to keep my mouth closed. Wearing all of the equipment PLUS a chin strap is very difficult. But I definitely could not do without the chin strap, even though I hate it. Seriously consider getting one...it will solve some of your problems.
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It doesn't head that I have a head like a cinder block. I've had the radical throat surgery and I have a giant tongue. Now I just have a bigger hole for my tongue to flop into when I doze off. I can't remember the last time I felt rested when I got up in the morning.
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OK can I just make one thing clear, as I stated in my opening post my mouth does not open when I sleep, thanks :)
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My insurance was dropped a couple of months ago. The CPAP supply place used to call me twice a month to send me new face pillows, filters, etc. Now they won't even return a call because I don't have the means to pay for all of this stuff. My machine needs to be re-calibrated, but they won't do it now.
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Permalink Reply by sleepycarol on
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You might try a Fisher and Paykel 431 mask. It has a flap at the bottom that cups under your chin to help with it creeping up. I have tried unsuccessfully to use other full face masks and keep going back to that one as the others tend to creep up and end up on my bottom lip causing massive leaks.
When you are asleep there is no way for you to actually tell if your lips are parting slightly when your jaw slacks. But I have the opinion since you are using a full face mask, that isn't your problem -- the leaks are occurring around the seal due to the shifting of the mask when your jaw becomes slack.
Unfortunately, the mask is the hardest part of the therapy to get the most effective treatment. It is, also, the most expensive part of the learning curve. Masks are very expensive, especially through brick and mortar DME's since they charge for each item seperately (headgear, seal, and frame). To keep my cost down and to fit it into my budget, I purchased gently used masks from cpapauction.com and other forum members to try. A good washing was all I felt that the masks needed. It took many, many masks for me to find the one that is most comfortable and gives me the best treatment. Good luck in your quest in finding your favorite mask.
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