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BethU
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Great idea, as always, Rose. Although I am known far and wide as a chinzy person (who can reach for the bill slower than me? 
, I think denim and faux black leather would be nice. Especially if it had a zipper across the mouth! That would be cool. As for the coordinating eyepatch, I still go for the big crossed-eyed look.
Aaaaarrrrrrrrrrrrrrrggggggggggggg, matey. Ya done did it again, Rose.
, I think denim and faux black leather would be nice. Especially if it had a zipper across the mouth! That would be cool. As for the coordinating eyepatch, I still go for the big crossed-eyed look.Aaaaarrrrrrrrrrrrrrrggggggggggggg, matey. Ya done did it again, Rose.
rose
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.... I experimented a little today, and found the strap needs to be either fairly strong elastic, which could make it difficult to pull on, or have a means to tighten it once in place, like a sliding adjuster on a shoulder strap.
Dan, if you wife has any ideas/design improvements, let us know. I was thinking maybe it should be seamed, with a little "shelf" for going under the chin, rather than a pleat, it would make it firmer support. Again, I'm trying to find a way to keep my lips together, so the chin support isn't such a biggie with me.
Ideally, an uncomplicated way to attach to the rest of the headgear could be nice, but I think having it use the ears to keep from sliding down is simpler.
Beth, you are so funny about the denim/leather concept. I had another idea ~ at a very "inappropriate" moment ~ of how I should get either black leather or black lace covers for my wrist supports, then I could be sexy and stronger in bed. ...
Dan, if you wife has any ideas/design improvements, let us know. I was thinking maybe it should be seamed, with a little "shelf" for going under the chin, rather than a pleat, it would make it firmer support. Again, I'm trying to find a way to keep my lips together, so the chin support isn't such a biggie with me.
Ideally, an uncomplicated way to attach to the rest of the headgear could be nice, but I think having it use the ears to keep from sliding down is simpler.
Beth, you are so funny about the denim/leather concept. I had another idea ~ at a very "inappropriate" moment ~ of how I should get either black leather or black lace covers for my wrist supports, then I could be sexy and stronger in bed. ...
rose
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Beth.... well surprise photos have been threatened ~ Re: bipap/ eye mask & chin/lip strap thing (it needs a name) combo.... the worse part will I won't be able to see it coming! If he can restrain himself when the moment strikes him, and takes the photo from only the neck up, I'll post it in that one album on my profile page.
In seriousness, I think there needs to be tension below the lower lip, where the chin indents, to keep the lip up, so, maybe two straps (like the deluxe eye masks have, one for around the head above the ears, to keep it up, and one around the head below the ears, to keep it taut. .... I'm going to have so many straps on me by time I get into the bed
..... BTW, you know, there is an oral bipap mask, where its made with the same principle as mouthguards with moldable plastic. I think it adheres to the upper teeth/hard palate. The literature says keeping mouth closed is not necessary with it.
In seriousness, I think there needs to be tension below the lower lip, where the chin indents, to keep the lip up, so, maybe two straps (like the deluxe eye masks have, one for around the head above the ears, to keep it up, and one around the head below the ears, to keep it taut. .... I'm going to have so many straps on me by time I get into the bed
..... BTW, you know, there is an oral bipap mask, where its made with the same principle as mouthguards with moldable plastic. I think it adheres to the upper teeth/hard palate. The literature says keeping mouth closed is not necessary with it.
BethU
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Actually, I am using my BiPap (full face mask) now with both my jaw and lips open. The discomfort I first experienced when I tried it was from thrush not the mask, and the pulmo seemed surprised that I was concerned about a "trivial" matter as keeping my mouth closed.
It apparently doesn't matter to my lungs how the air gets there as long as it gets there. AND ... I am getting a lot of oral satisfaction with this. I swear it's the best thing since smoking ... those deep inhales, yummy ! Also, with California's usual humidity (0%), having a little humidifier on the BiPap actually is more pleasant in my mouth than breathing bone dry air.
It apparently doesn't matter to my lungs how the air gets there as long as it gets there. AND ... I am getting a lot of oral satisfaction with this. I swear it's the best thing since smoking ... those deep inhales, yummy ! Also, with California's usual humidity (0%), having a little humidifier on the BiPap actually is more pleasant in my mouth than breathing bone dry air.
rose
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Beth, I did not know you'd switched. What about laying on your stomach to sleep? I'm glad you found something that works for you.
For those that still are trying to keep the mouth closed, I did experiment more, just with old elastic adjustable straps I had in the sewing basket. I think there needs to be one part of it that goes on the chin to hold the lower lip up, and a part going under the chin, all connected to elastic that runs over the top of the head, rather than above/behind the ears. I did not try the cloth sling as I didn't have the energy to get into this that deep. What I wound up with kind of looks like a harness for a weirdly shaped dog or something LOL. If it works, I will eventually add pictures of the refined product.
I know respironics makes head gear with nasal pillows, and this headgear has a chin strap, but (beside the fact that the nasal pillows don't fit me) the chin strap did nothing to keep my lips together, the whole fit was wrong for me....
For those that still are trying to keep the mouth closed, I did experiment more, just with old elastic adjustable straps I had in the sewing basket. I think there needs to be one part of it that goes on the chin to hold the lower lip up, and a part going under the chin, all connected to elastic that runs over the top of the head, rather than above/behind the ears. I did not try the cloth sling as I didn't have the energy to get into this that deep. What I wound up with kind of looks like a harness for a weirdly shaped dog or something LOL. If it works, I will eventually add pictures of the refined product.
I know respironics makes head gear with nasal pillows, and this headgear has a chin strap, but (beside the fact that the nasal pillows don't fit me) the chin strap did nothing to keep my lips together, the whole fit was wrong for me....
Tfisher
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My mom used her chin strap for the first time last night (we both thought it looked more like a jock strap!). I'm thinking it didn't go very well as I saw it on her bedroom floor this morning. I think I would go crazy having all that head gear on but I guess when there's no choice.....
rose
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my sucess and lack thereof
1) The headgear the RT fitted me with (I should say failed to fit me with) had a chin strap. But, as mentioned above, it didn't fit, like as in any of it, and the strap would have done nothing to keep my mouth shut.
2) I don't sleep with my mouth open, but my lips are losing seal, and its become problematic keeping them shut tight enough to keep air from escaping.
3) Because the RT did not give me headgear that would work for me (see #1!) I purchased my own headgear with a nasal mask which did fit me, and at the time everything was peachy because I could keep my lips together.
4) My insurance won't pay for another one for quite some time still. And when insurance will cover it, I guess I'll try the full face, but, I'm kind of claustraphobic and concerned about this.
So.... I experimented with elastic straps, they kind of worked, but it was hard on my face. Yesterday, I took a piece of organza fabric I had on hand, and made the sling thing. However, I didn't take into account, as this was supposed to be just a prototype, that it wasn't silk or natural fiber organza, but some sort of synthetic type, and it irritated the skin on my face A LOT! But, functionally it worked, my lips stayed shut. I cut the fabric in a trapezoid shape, longest part being about 16 " tapering to 14" X 4" wide, and turned under all of the edges., gathered up sides, and sewed to headgear strap ~ and I now have to rip the stitches back off of it :neutral:
Next step is to get a piece of fabric that won't irritate my skin, and make another one. I also don't know if a fabric with some stretch would be a good or bad thing.
I think it would be easier to adjust, as far as fit, if it were attached to a separate head strap, rather than trying to incorporate it onto the bipap headgear.
I will add some pictures of what I did make. They will be on my profile page in the bipap album. I tried to load them directly with a link onto this post, and it didn't work. Don't know why.... not much of a tech here, but it worked for the snow photo the other day (?)
Mind you I'm home alone today, therefore the sole photographer available , (I actually cannot believe I"m posting these on the internet LOL) but, I think its a big enough problem for some of us, and getting sleep is good, getting sleep and breathing well is much better.
1) The headgear the RT fitted me with (I should say failed to fit me with) had a chin strap. But, as mentioned above, it didn't fit, like as in any of it, and the strap would have done nothing to keep my mouth shut.
2) I don't sleep with my mouth open, but my lips are losing seal, and its become problematic keeping them shut tight enough to keep air from escaping.
3) Because the RT did not give me headgear that would work for me (see #1!) I purchased my own headgear with a nasal mask which did fit me, and at the time everything was peachy because I could keep my lips together.
4) My insurance won't pay for another one for quite some time still. And when insurance will cover it, I guess I'll try the full face, but, I'm kind of claustraphobic and concerned about this.
So.... I experimented with elastic straps, they kind of worked, but it was hard on my face. Yesterday, I took a piece of organza fabric I had on hand, and made the sling thing. However, I didn't take into account, as this was supposed to be just a prototype, that it wasn't silk or natural fiber organza, but some sort of synthetic type, and it irritated the skin on my face A LOT! But, functionally it worked, my lips stayed shut. I cut the fabric in a trapezoid shape, longest part being about 16 " tapering to 14" X 4" wide, and turned under all of the edges., gathered up sides, and sewed to headgear strap ~ and I now have to rip the stitches back off of it :neutral:
Next step is to get a piece of fabric that won't irritate my skin, and make another one. I also don't know if a fabric with some stretch would be a good or bad thing.
I think it would be easier to adjust, as far as fit, if it were attached to a separate head strap, rather than trying to incorporate it onto the bipap headgear.
I will add some pictures of what I did make. They will be on my profile page in the bipap album. I tried to load them directly with a link onto this post, and it didn't work. Don't know why.... not much of a tech here, but it worked for the snow photo the other day (?)
Mind you I'm home alone today, therefore the sole photographer available , (I actually cannot believe I"m posting these on the internet LOL) but, I think its a big enough problem for some of us, and getting sleep is good, getting sleep and breathing well is much better.
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BethU
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Rose, your solution sounds very ingenious. Hope it works.
I realize that even on my stomach, I turn my head to the side, so it's not much of a change to sleep on my side. For the first time last night, I slept all the way through the night with the Mask From Hell. Couldn't believe it! Woke at midnight for no reason, went back to sleep, and presto chango it was 6:30 a.m.
I do feel more energy and more alive today, but don't know if it's the cold going away or the BiPap. I kinda think it's both, with the BiPap getting most of the credit. I'm pleased, as my pulmo only expected me to be up to three hours a night by the time I see him next (end of March.)
I have received insurance authorization for the cough assist, and boy do I need it. I seem to have the same problem with coughing as I do with swallowing ... I can't initiate it. When a cough happens naturally, it's great, but I can't duplicate whatever it takes to make myself cough again ... all I can do is make LOUD noises like AWWWWKKKKK ! I pity poor Paul having to hear me AWKing away.
But I figure I've got everything I need to stop a home-invasion robbery. Anyone ever tries to break in, I'll leap out of bed (yeah, right, give me an hour) in my Darth Vadar mask trying to cough (AWKKK) and twirling my feeding tube at them.
And to think, back in the day, men used to complain when their wives went to bed in curlers.
I realize that even on my stomach, I turn my head to the side, so it's not much of a change to sleep on my side. For the first time last night, I slept all the way through the night with the Mask From Hell. Couldn't believe it! Woke at midnight for no reason, went back to sleep, and presto chango it was 6:30 a.m.
I do feel more energy and more alive today, but don't know if it's the cold going away or the BiPap. I kinda think it's both, with the BiPap getting most of the credit. I'm pleased, as my pulmo only expected me to be up to three hours a night by the time I see him next (end of March.)
I have received insurance authorization for the cough assist, and boy do I need it. I seem to have the same problem with coughing as I do with swallowing ... I can't initiate it. When a cough happens naturally, it's great, but I can't duplicate whatever it takes to make myself cough again ... all I can do is make LOUD noises like AWWWWKKKKK ! I pity poor Paul having to hear me AWKing away.
But I figure I've got everything I need to stop a home-invasion robbery. Anyone ever tries to break in, I'll leap out of bed (yeah, right, give me an hour) in my Darth Vadar mask trying to cough (AWKKK) and twirling my feeding tube at them.
And to think, back in the day, men used to complain when their wives went to bed in curlers.
sharonca
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My husband says I make so much noise trying to get to sleep. My mouth comes open - weird air escaping sounds come out - I get my mouth shut and a few minutes later it starts over again.
I tried the chin strap that came with the bi-pap and it just kept falling off.
Sharonca
I tried the chin strap that came with the bi-pap and it just kept falling off.
Sharonca
rose
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Sharonca,
I know! Beth had it right when she said "Darth Vader" the sound is kind of like that too when my mouth comes open! If you have one of those white noise sound machines, and run it in the room, it helps drown out the woosh woosh sound for the other person anyway.
The strap was useless on the headgear I had, but even if it would have fit, it would not have addressed keeping my lips closed. I did load the photos of my experiment chin/lip thing, its on my profile page though. The other day I could get a photo from photobucket to go right into my post, but no luck today.
What I wonder, is if there is a product out there for bulbar folks, even for use without the bipap to help them with mouth closure. It seems like I saw something one time, very unobtrusive, just mostly nylon (in appearance)_ strings. It was a small photo of some woman that maybe was someone well known before she had ALS (?) I just remember trying to enlarge the photo of her on my computer, to look at the device better, and was unsuccessful.
I know! Beth had it right when she said "Darth Vader" the sound is kind of like that too when my mouth comes open! If you have one of those white noise sound machines, and run it in the room, it helps drown out the woosh woosh sound for the other person anyway.
The strap was useless on the headgear I had, but even if it would have fit, it would not have addressed keeping my lips closed. I did load the photos of my experiment chin/lip thing, its on my profile page though. The other day I could get a photo from photobucket to go right into my post, but no luck today.
What I wonder, is if there is a product out there for bulbar folks, even for use without the bipap to help them with mouth closure. It seems like I saw something one time, very unobtrusive, just mostly nylon (in appearance)_ strings. It was a small photo of some woman that maybe was someone well known before she had ALS (?) I just remember trying to enlarge the photo of her on my computer, to look at the device better, and was unsuccessful.
rose
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I thought I should update this.... and do a synopsis in the process.
I do not sleep with my mouth open. Even if I did, my original headgear provided to me had a chin strap which was useless because it was too big for my face, and even tightened as much as the straps allowed, it would have done nothing to keep my mouth shut. The original RT that came out to the house to fit me for this was, I feel, negligent. He was nice enough, but was pretty much in a hurry to go through the appointment as quickly as he could. He only had the one mask for me to try (presumably he had others somewhere, maybe out in his vehicle?) but he deemed that the mask fit me, and he left. So, the mask did not fit, I did not understand how important it was at the time, because I hadn't started trying to use it yet.
But, it was an issue, because the mask leaked at my nose, it was a nasal pillow type mask, and if I tightened it enough to try to keep a seal there, it hurt my nose, it pushed it up too much, and it still leaked. It just was not a good fit all the way around, and I eventually ordered myself a mask off of the internet.
The other problem was that the velocity of the air pressure was too high. First, because I was required to try and fail a CPAP, (for insurance purposes) and then, because the expiratory pressure was initially set too high when I was switched to BiPAP.
Then it was good for a while, but gradually I started having problems with my lips getting blown open when I slept, which lead to dry mouth, the humidifier running out of water, just the whole hassle all over again. This was when I first joined in posting on this thread. I tried to design a chin strap that would hold my lips closed, as it was not my mouth opening due to my jaw, but rather my lips.
The design eventually came up with did work, it kept my lips from opening, but I needed softer fabric, and adding more straps to my head just got all tangled up with my hair, so, instead of trying to make another one with different cloth, I resigned myself to just biting the bullet, paying out of pocket for a full face mask.
.... Then it dawned on me. :idea:It wasn't my lips per se. Yes, their seal is weaker than it used to be, (for example) I can no longer even attempt to swish mouthwash in my mouth, I just have to hold it and then spit it out.... but, if the pressure of my BiPAP was set correctly, why was the air bubbling up and escaping out of my lips, rather than just staying back in my throat, in the passage to my nose, from my lungs ?
My pulmonologist agreed, he had the RT come out and lower the settings on my BiPAP, and it completely solved the problem.
After struggling with this machine for months now, this is what I think:
If a person sleeps with their mouth open, they need a mask with a chin strap which actually fits, (what a concept!) or to get a full face mask so they can sleep with their mouth open.
If a person is "overblown" then the problem is the machine settings. Its just as important to be able to breathe out the Co2 as it is to breath in enough air, so if there are problems managing the flow, then kick up a fuss, and get the machine set correctly.
When the settings are correct, and the mask fits, a BiPAP is a wonderful thing. It helps so much, and it helps in many ways, I'm less fatigued, I don't get headaches when I sleep... When I'm just having a weak day all the way around, I can put it on for 20 minutes or so, and it helps me to feel better. It is well worth the effort to fight to get it right.
I do not sleep with my mouth open. Even if I did, my original headgear provided to me had a chin strap which was useless because it was too big for my face, and even tightened as much as the straps allowed, it would have done nothing to keep my mouth shut. The original RT that came out to the house to fit me for this was, I feel, negligent. He was nice enough, but was pretty much in a hurry to go through the appointment as quickly as he could. He only had the one mask for me to try (presumably he had others somewhere, maybe out in his vehicle?) but he deemed that the mask fit me, and he left. So, the mask did not fit, I did not understand how important it was at the time, because I hadn't started trying to use it yet.
But, it was an issue, because the mask leaked at my nose, it was a nasal pillow type mask, and if I tightened it enough to try to keep a seal there, it hurt my nose, it pushed it up too much, and it still leaked. It just was not a good fit all the way around, and I eventually ordered myself a mask off of the internet.
The other problem was that the velocity of the air pressure was too high. First, because I was required to try and fail a CPAP, (for insurance purposes) and then, because the expiratory pressure was initially set too high when I was switched to BiPAP.
Then it was good for a while, but gradually I started having problems with my lips getting blown open when I slept, which lead to dry mouth, the humidifier running out of water, just the whole hassle all over again. This was when I first joined in posting on this thread. I tried to design a chin strap that would hold my lips closed, as it was not my mouth opening due to my jaw, but rather my lips.
The design eventually came up with did work, it kept my lips from opening, but I needed softer fabric, and adding more straps to my head just got all tangled up with my hair, so, instead of trying to make another one with different cloth, I resigned myself to just biting the bullet, paying out of pocket for a full face mask.
.... Then it dawned on me. :idea:It wasn't my lips per se. Yes, their seal is weaker than it used to be, (for example) I can no longer even attempt to swish mouthwash in my mouth, I just have to hold it and then spit it out.... but, if the pressure of my BiPAP was set correctly, why was the air bubbling up and escaping out of my lips, rather than just staying back in my throat, in the passage to my nose, from my lungs ?
My pulmonologist agreed, he had the RT come out and lower the settings on my BiPAP, and it completely solved the problem.
After struggling with this machine for months now, this is what I think:
If a person sleeps with their mouth open, they need a mask with a chin strap which actually fits, (what a concept!) or to get a full face mask so they can sleep with their mouth open.
If a person is "overblown" then the problem is the machine settings. Its just as important to be able to breathe out the Co2 as it is to breath in enough air, so if there are problems managing the flow, then kick up a fuss, and get the machine set correctly.
When the settings are correct, and the mask fits, a BiPAP is a wonderful thing. It helps so much, and it helps in many ways, I'm less fatigued, I don't get headaches when I sleep... When I'm just having a weak day all the way around, I can put it on for 20 minutes or so, and it helps me to feel better. It is well worth the effort to fight to get it right.
BethU
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I'll jump in, too, because my main problem has not been so much the mechanics of the BiPap, but the Apria RT, who brought the wrong machine, at the wrong settings (much too high), and who had a really lousy attitude. Like Rose's experience, he was in such a hurry to get going, he barely did anything more than rushing through a demo and taking off. (I suspect that Apria in this area is working with reduced staff ... laying off people who are needed to provide decent service ... but I don't know this. But I've met three of their RTs and they all seemed to be racing against the clock.)
Anyway ... I got a chin strap a while back only to realize that it is my lips that are the problem, not my jaw. So I use a full face mask, and put the humidifier at a 3 ... higher than the RT advised ... because when I wake up, my lips are soft and feel "normal" again. Otherwise, with mouth breathing all day and night and L.A.'s desert air, my lips are perpetually dry and cracked. I go through a ton of Chap Stick.
My pulmo sent me to his sleep study center to get fitted for a better mask, and I got one, but it gave me trouble, too. The technician there said all full face masks leak a little. I'm using my original mask and try to adjust it so that none of the air leaks are near my eyes, as I don't need my eyes drying out any more either ! Last night I tried taping the top of the mask to my face to eliminate a specific air leak, but the tape fell off during sleep.
I feel this is all a Mickey Mouse solution to our breathing problems ... but I'm willing to put up with it to give my diaphragm a rest ... and I seem to feel a little better when I get a full night's sleep with one on ...but I don't get the boost of energy other's achieve.
Still ... it's one of the ways we PALS can help extend our lives, as it rests the diaphragm, so I'll go on fussing. I've decided I'm going to use every tool available if it has proven benefits.
Speechless (and breathless) in L.A.
Anyway ... I got a chin strap a while back only to realize that it is my lips that are the problem, not my jaw. So I use a full face mask, and put the humidifier at a 3 ... higher than the RT advised ... because when I wake up, my lips are soft and feel "normal" again. Otherwise, with mouth breathing all day and night and L.A.'s desert air, my lips are perpetually dry and cracked. I go through a ton of Chap Stick.
My pulmo sent me to his sleep study center to get fitted for a better mask, and I got one, but it gave me trouble, too. The technician there said all full face masks leak a little. I'm using my original mask and try to adjust it so that none of the air leaks are near my eyes, as I don't need my eyes drying out any more either ! Last night I tried taping the top of the mask to my face to eliminate a specific air leak, but the tape fell off during sleep.
I feel this is all a Mickey Mouse solution to our breathing problems ... but I'm willing to put up with it to give my diaphragm a rest ... and I seem to feel a little better when I get a full night's sleep with one on ...but I don't get the boost of energy other's achieve.
Still ... it's one of the ways we PALS can help extend our lives, as it rests the diaphragm, so I'll go on fussing. I've decided I'm going to use every tool available if it has proven benefits.
Speechless (and breathless) in L.A.
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