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Old 07-03-2011, 08:11 PM   #1 (permalink)
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Default Bipap "side effect"

Okay, I posted about this a few months ago when this phenomenon was just starting. It happens every single time I use the bipap now, when I first start to relax (and fall asleep) The surface of my tongue starts to vibrate and make a whirly noise, it flutters so much that it sometimes gets my lips to fluttering too. I sleep with my mouth closed, but can't keep a tight lip seal. Once my tongue gets stuck up to the roof of my mouth the noise stops, but until then, man is it loud! Its like a snore, but is constant, inhale exhale, doesn't matter if the air is flowing.

Its so WEIRD! I think I asked before if anyone else had this happen, and am still curious... My best guess is its due to atrophy, and the membrane of my tongue being kind of loose. But, I'm not the only one with tongue atrophy, so why doesn't anyone else mention this?

Anymore its almost comforting, I'll hear it start up and I'll think to myself, "good, I must be falling asleep" .... and then I do

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Old 07-03-2011, 09:10 PM   #2 (permalink)
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Default Re: Bipap "side effect"

I don't know. I do know my husband's mask "flubbers" when he moves around and knocks it out of kilter. I don't think that is what you are talking about though.
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Old 07-04-2011, 10:13 AM   #3 (permalink)
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Default Re: Bipap "side effect"

Thanks CJ. No, its not the mask or machine, (I know what you're describing though) its my tongue , and sometimes lips, making the fluttering whirling sound. Its probably not really that loud sounding to others. its louder to me because its inside my mouth! I feel it too, it usually starts at a very specific spot on the top of my tongue, and spreads out over the entire surface of my tongue, even the underside. Most of the time that's it. But, sometimes my lips get into the act too.
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Old 07-04-2011, 12:53 PM   #4 (permalink)
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Default Re: Bipap "side effect"

Well I certainly have tongue atrophy along with everything else mouth related but I've never experienced what you are describing. Must be just the way that your beautiful face is put together
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Old 07-04-2011, 01:52 PM   #5 (permalink)
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Default Re: Bipap "side effect"

I get what you described also, Rose. Almost like a snore but definitely on the surface of the tongue. Weird sensation and impressively loud -- sounds like a duck call hooked up to a compressed air hose.

I use a nasal pillows mask with a chin strap.
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Old 07-04-2011, 03:18 PM   #6 (permalink)
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Default Re: Bipap "side effect"

Allen,

Thank you so much for responding! I could just kiss you, so glad to learn I'm not the only one! We must have mini wind vortexes lol (and Barry, I could just kiss you too, because you're you). smooch smooch both of you

BTW I use a nasal mask (the type shaped like a triangle) so far have not had to resort to one that covers my mouth, because even if my lips come apart, after a while my tongue gets stuck to the roof of my mouth, it sort of scrunches up, sometime to the extreme that the tip of it folds up and the underside of it is against the roof (so attractive sounding, right?) This keeps me from having trouble with air escaping out of my mouth.

I tried nasal pillow mask styles first, and they were not my friends
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Old 07-06-2011, 10:13 AM   #7 (permalink)
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Default Re: Bipap "side effect"

Rose, the chin strap still might help. I can't wear it because it makes me feel weird, but it does keep the mouth from being able to open at all with the nasal mask.
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Old 07-10-2011, 10:02 AM   #8 (permalink)
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Default Re: Bipap "side effect"

Thanks But, my mouth actually does stay closed. My lips don't seal well, but nothing will help with that other than a full face (nose and mouth covered) mask. I don't get air escaping out of my mouth. In the morning, the water reservoir of the humidifier of AVAP is still about a 3rd full. (and it would be empty if my mouth opened)

I'm good with this now that I know I'm not alone. I know it sounds silly maybe, but its always nice to have company when it comes to the oddities.
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Old 07-21-2011, 12:59 AM   #9 (permalink)
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Default Re: Bipap "side effect"

I wake myself up with some kind of vocal sound...not a snore but a cross between a snore and vocal sounds...strange.
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Old 07-22-2011, 11:42 AM   #10 (permalink)
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Default Re: Bipap "side effect"

Just got my bipap yesterday, with nose pillows. It scares me a bit. The air flow is so strong that I feel like my lungs are being blown up like a balloon. There is a button I can push that lowers the pressure and then slowly builds up again. The weirdest thing is that it starts to fill my mouth, and my mouth then opens....I cant imagine sleeping with this! I think it can be adjusted but only by a "provider" so I may have to call my lung doc and see if he would lower it a bit, just so my mouth doesnt fill. Any ideas?
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Old 07-22-2011, 02:06 PM   #11 (permalink)
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Default Re: Bipap "side effect"

Do you put your mask on before turning the machine on that is the only way I can use it and my daughter says what difference does it make well to me it makes a huge difference.
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Old 07-25-2011, 11:41 PM   #12 (permalink)
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Default Re: Bipap "side effect"

Yes, turn on the machine after I put on the nasal pillows. It helps. But the air filling my mouth defeats the purpose of the bipap as my mouth opens and air escapes. I will be seeing the RT at the ALS clinic to see what can be done.
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Old 07-26-2011, 12:05 AM   #13 (permalink)
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Default Re: Bipap "side effect"

Sharon, it sounds like you need a mask that covers both your nose and your mouth. I can't close my mouth so that's what I wear and other than a dry mouth it works well.
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Old 07-26-2011, 10:55 PM   #14 (permalink)
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Default Re: Bipap "side effect"

Ahhh Barry I bet you look cute with your darth vader mask. (Ray's words)

Diane, what you describe sounds exactly what happens to my hubby at night. He has the full mask and his mouth is closed. But very strange noise.
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Old 07-27-2011, 12:59 AM   #15 (permalink)
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Default Re: Bipap "side effect"

Quote:
Originally Posted by Sequoia View Post
Yes, turn on the machine after I put on the nasal pillows. It helps. But the air filling my mouth defeats the purpose of the bipap as my mouth opens and air escapes. I will be seeing the RT at the ALS clinic to see what can be done.
Have you tried some type of chin strap to keep your jaws closed? Perhaps one of your nice headscarves tied snugly under the chin? Also, a full-face mask will do the trick if you can get past the initial claustrophobia.

One way to get used to nasal pillows is to use them when you are awake during the day. It makes the switch to full-time BiPAP use much easier when that time comes

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