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Mask troubles
I am having trouble with my FitLife Total Face Mask blowing out on the sides and the top when the pressure gets high (16 is high for me on ASV). My bottom teeth have also moved far out of position- well one tooth has really moved and I'm sure others have shifted. I am a mouth breather and cannot tolerate anything on the bridge of my nose. I'm going to call my RT today and see if she has any ideas. Any ideas out here?
Hope everyone is well. I'm doing pretty well, myself.
Mary
Views: 421
Replies to This Discussion
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Permalink Reply by Peggy B. on
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This sounds very uncomfortable. I couldn't stand anything on my face, so I use the nasal pillows. I do wish there was some way to figure out a way to just stop this problem so we don't have to keep fiddling with these awful, uncomfortable masks.
I haven't heard about the teeth shifting. This must be uncomfortable to.
I do hope you get some help. This sleep mess, or lack of it, is just messing up with living.
Take care.
Peggy
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Permalink Reply by Ginny Edmundson on
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I agree with you, Peggy. I could kind of handle the nasal pillows... but then I have to use a chin strap. I still dread bedtime every night. I can't wait for sunrise so I can get up and take the damn stuff off of my face. Some nights the pillows will do fine all night. Other nights I have to adjust them 2-3 times. I have heard of teeth shifting before. I know of someone that is now wearing a guard during the day to get them back in position. I do feel fine doing the day. My AHI is averaging 1.4 so that is good. Nut I will never say I am comfortable with CPAP> It has changed many aspects of my life... and not all for the good. Sorry for my whining today.
Peggy B. said:This sounds very uncomfortable. I couldn't stand anything on my face, so I use the nasal pillows. I do wish there was some way to figure out a way to just stop this problem so we don't have to keep fiddling with these awful, uncomfortable masks.
I haven't heard about the teeth shifting. This must be uncomfortable to.
I do hope you get some help. This sleep mess, or lack of it, is just messing up with living.
Take care.
Peggy
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Ginny, I could have written the same post, you express on feelings...but I am so convinced that I need the CPAP, that I refuse to get into the negative attitude mode. We have to think of CPAP healing us, bringing our oxygen levels up to normal and avoiding the strokes, heart attacks, diabetes, etc..at an early age.
Mary, I think Sheriff on CPAP.com uses the total face mask, so maybe you could ask him for tips to seal the mask. Just sounds to me that the RT might want you to try another mask. Would a mask with a dental mouth guard on your lower teeth, be an option?
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Well, I have not missed a night on CPAP since day one. BUT I still hate it! :) I know what it does for my body but it still makes me feel terrible mentally. I hate the marks on my face that last for hurs. I have some pad a cheek that I have used but they are very warm sometimes and bulky also. If I could just put the darn "stuff on" without fiddling and go to sleep like a normal person. I am dreading going to bed right now!!! So I stay up until I am so tired I can't keep my eyes open. There has to be another solution. Hope it is in my life time.
K. S. said:Ginny, I could have written the same post, you express on feelings...but I am so convinced that I need the CPAP, that I refuse to get into the negative attitude mode. We have to think of CPAP healing us, bringing our oxygen levels up to normal and avoiding the strokes, heart attacks, diabetes, etc..at an early age.
Mary, I think Sheriff on CPAP.com uses the total face mask, so maybe you could ask him for tips to seal the mask. Just sounds to me that the RT might want you to try another mask. Would a mask with a dental mouth guard on your lower teeth, be an option?
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The marks, the Pad-a-check, add my eye and nose lube, tape, all the hassles...we can't choose what disease will strike us. At least with apnea, there is a treatment! I think we all feel some degree of anger, maybe that's why I have to read the blogs so often. Just keep up the treatment.
I think someday we'll have a tongue stabilizer or other alternatives.
The Swift FX pillows, with a bit of lanolin, seem as the least invasive. I sympathize with Mary's full face leaky experience.
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I was using the Swift FX, now the Pilairo. Could never find full face mask that would fit my small face. Waiting for the Wisp!!! Only up from 3-4 this morning with readjusting! May try some lanolin with the Pilairo. Have you read about the Hypoglossal nerve stimulation that is in trial stages?
K. S. said:The marks, the Pad-a-check, add my eye and nose lube, tape, all the hassles...we can't choose what disease will strike us. At least with apnea, there is a treatment! I think we all feel some degree of anger, maybe that's why I have to read the blogs so often. Just keep up the treatment.
I think someday we'll have a tongue stabilizer or other alternatives.
The Swift FX pillows, with a bit of lanolin, seem as the least invasive. I sympathize with Mary's full face leaky experience.
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The lanolin helps seal the pillows. I use the XS FX pillow and try to keep the straps loose. Somehow the Pad-a-Check pillow cozy seems to stabilize the pillow better outside my nose. Plus, I use a hose holder to take the drag of the hose on the pillow. I rotate between two sets of FX pillows, so my nightly pillow and cozy are all dried out.
The nerve stimulation is placed in like a pacemaker. Dr Park may know of some trials that you could contact.
One of my OSA friends has severe MS. She puts OSA in perspective; just thankful to have a treatment.
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Yes...there ARE some things worse then apnea! I have been reading about the hypoglossal nerve thing. Mentioned it to my doctor. She said she would let me know when she heard anything about it. Not holding my breath (no pun intended) . I find it puzzling that a certain mask or pillow might work for a while and then suddenly they don't and a new style works better. I use the Swift FX for a while with the barrel cozy and it seemed fine. Then....NO! So that is why the Pilairo now. Like I said, waiting for the Wisp to try it.
K. S. said:The lanolin helps seal the pillows. I use the XS FX pillow and try to keep the straps loose. Somehow the Pad-a-Check pillow cozy seems to stabilize the pillow better outside my nose. Plus, I use a hose holder to take the drag of the hose on the pillow. I rotate between two sets of FX pillows, so my nightly pillow and cozy are all dried out.
The nerve stimulation is placed in like a pacemaker. Dr Park may know of some trials that you could contact.
One of my OSA friends has severe MS. She puts OSA in perspective; just thankful to have a treatment.
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The Wisp does looks appealing, so keep us posted.
As to the FX no longer working, did you try a new pillow? The headgear back strap rides up after a year, so maybe that could alter the fit. I really think our nostrils enlarge, so perhaps, a larger pillow?
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Some nights the Ex small pillow would feel fine, other times the medium...then none of them felt right. Have since gotten rid of the Swift. It's the same with the Pilairo. Some nights (not really often) I can put it on and it's "right" from the start. Most nights I have to place and replace for about 30 minutes and then it's fine. I change the pillows every two weeks on it. Not sure if really necessary but I do it. I will let you know about the Wisp as soon as I can get my hands on one!!!
I have a mouth appliance that cost a little over $500. Did not help with tongue falling back. I know local dentist that makes one (and he actually uses one while using HIS CPAP) that costs about $2,000. If I knew it would work I would get but since there are no guarantees I have "passed" on it and stuck with the lousy chin strap. I hate how it makes my neck feel.
Well, sun still up...so don't have to think about bedtime yet! :)
And the thought that our nostrils enlarge.... yuck! I am not large anywhere. 5'5" @ 123 pounds. Lost about 13 pounds over 6 months due to increased activity and changes in diet. Sleep Doc wanted to know if I thought loosing weight would help my apnea. I told her "no" but that it was intentional weight loss.Oh, and instead of a hose holder I use a rubber band and large safety pin to hold tube to edge of bed.
K. S. said:The Wisp does looks appealing, so keep us posted.
As to the FX no longer working, did you try a new pillow? The headgear back strap rides up after a year, so maybe that could alter the fit. I really think our nostrils enlarge, so perhaps, a larger pillow?
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OH GINNY!! I wake up so many times with that thing on my face. I am like you. I DREAD bed time. How awful. And considering how vital sleep is to our bodies? Well, it makes me wonder how much this is taking off my years.....ha ha boo hoo.
Ginny Edmundson said:I agree with you, Peggy. I could kind of handle the nasal pillows... but then I have to use a chin strap. I still dread bedtime every night. I can't wait for sunrise so I can get up and take the damn stuff off of my face. Some nights the pillows will do fine all night. Other nights I have to adjust them 2-3 times. I have heard of teeth shifting before. I know of someone that is now wearing a guard during the day to get them back in position. I do feel fine doing the day. My AHI is averaging 1.4 so that is good. Nut I will never say I am comfortable with CPAP> It has changed many aspects of my life... and not all for the good. Sorry for my whining today.
Peggy B. said:This sounds very uncomfortable. I couldn't stand anything on my face, so I use the nasal pillows. I do wish there was some way to figure out a way to just stop this problem so we don't have to keep fiddling with these awful, uncomfortable masks.
I haven't heard about the teeth shifting. This must be uncomfortable to.
I do hope you get some help. This sleep mess, or lack of it, is just messing up with living.
Take care.
Peggy
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It kind of makes me feel better to know it is not just me that feels this way. It no longer is fun to lie in bed in the morning after waking up on a day that one does not HAVE to get up. Once awake I just want the "monster" off of my face. I am so hopeful other treatment options will come along SOON. Since so many are diagnosed with this now it is a real $$ maker so the industry will be doing all they can to make more off of us........which mens maybe more options in future that may be less anxiety producing. less anger producing.
Peggy B. said:OH GINNY!! I wake up so many times with that thing on my face. I am like you. I DREAD bed time. How awful. And considering how vital sleep is to our bodies? Well, it makes me wonder how much this is taking off my years.....ha ha boo hoo.
Ginny Edmundson said:I agree with you, Peggy. I could kind of handle the nasal pillows... but then I have to use a chin strap. I still dread bedtime every night. I can't wait for sunrise so I can get up and take the damn stuff off of my face. Some nights the pillows will do fine all night. Other nights I have to adjust them 2-3 times. I have heard of teeth shifting before. I know of someone that is now wearing a guard during the day to get them back in position. I do feel fine doing the day. My AHI is averaging 1.4 so that is good. Nut I will never say I am comfortable with CPAP> It has changed many aspects of my life... and not all for the good. Sorry for my whining today.
Peggy B. said:This sounds very uncomfortable. I couldn't stand anything on my face, so I use the nasal pillows. I do wish there was some way to figure out a way to just stop this problem so we don't have to keep fiddling with these awful, uncomfortable masks.
I haven't heard about the teeth shifting. This must be uncomfortable to.
I do hope you get some help. This sleep mess, or lack of it, is just messing up with living.
Take care.
Peggy
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