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maypema

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Hello,
I am working with a person with ALS who has bulbar onset. We are trying to assist in using the BiPAP. She becomes very claustrophobic and has lots of secretions. We are trying sitting up in a lounge chair with someone close by & soft soothing music. The longest she has been able to use the BiPAP is 15 minutes. I would appreciate hearing how you have worked with this.
 

Al

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I'm assuming you are using a full face mask. Have you thought of trying nose pillows and some use a chin strap with them to keep the mouth closed. They are less confined feeling I am told. I haven't tried them myself but may get some soon as I am starting to get some skin irritation in a couple of spots around my mask.
AL.
 

Al

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I do usually recommend what you are doing although I tell them to watch TV and just hold the mask on their face until they feel comfortable and then put the straps on.
AL.
 

maypema

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Hi Al,
Thanks for the replies. She has a full face mask that fits pretty well. I was led to understand the nose pillows don't work once the person cannot keep their mouth closed and she is losing the ability to do that. Good idea to just have her hold the mask in place, will it still function properly that way? What about her copious secretions since she can't swallow them? She takes several medications for the secretions but they do have to come out someway and if you can't swallow they are coming out under the mask. She's at 30% so really needs this.
 

Al

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Most people with nose pillows use a soft elastic chin strap that goes over the head and under the chin to hold the mouth closed. I haven't had the secretion problem so am unsure about that issue. Most people up here get prescribed Elavil to help dry them up. Does she still have enough hand strength to hold the mask firmly against her face? My hands are pretty well shot but I could hold mine up for 10 or 15 minutes if I had to.
AL.
 

edna may

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Bipap intolerence

Al said:
Most people with nose pillows use a soft elastic chin strap that goes over the head and under the chin to hold the mouth closed. I haven't had the secretion problem so am unsure about that issue. Most people up here get prescribed Elavil to help dry them up. Does she still have enough hand strength to hold the mask firmly against her face? My hands are pretty well shot but I could hold mine up for 10 or 15 minutes if I had to.
AL.

Hellion, The Bipap was difficult for me at first. I have the pillows. I got over that panicky feeling by reading in bed until I couldn't keep my eyes open any longer then I'd put the Bipap on. I also have heavy secretions & I sleep with a roll of paper towels on the bed side table, one sheet crumpled up on the pillow to catch my drool, (I sleep on my side) I wake up a few times through the night to tear of another sheet. not the best solution but it works for me. I now wear the Bipap iall night in comfort. EN:cool:
 

Michael Blue

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Sounds like you're doing all you can. Unfortunately some people suffer from these irrational emotional reactions to CPAP, and there's sometimes not a lot you can do for it. This is extremely unfortunate where it concerns ALS Pts, given the nature of their need.

Even in traditional CPAP Pts, there may be a 2-3 week period of multiple intrusions of sleep due to a period of becoming accustomed to having a mask on your face, but for people who are inclined to claustrophobia, this can be very difficult, or seemingly impossible, to overcome.

Being an irrational emotional thing; even if the Pt knows that they need it and why, they may not be able to tollerate it.

Keep doing what you're doing; and best of luck to you!

~M
 

Marjorie R. Wilcox

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my 2 cents

Maybe using a smaller fullface mask would help. My Rick tried the bigger one that fits over his mouth too, and he didn't like it at all. He wears a chin strap and sits up at a 45 degree angle in his new specialty bed. He puts pillows under his elbows so that he doesn't slip downward and is more comfortable. He tried different adjustments to the tightness of the straps on each side of his face, too. We have become accustomed to the sounds and the pressures of the bipap since we know how much it benefits him.... and then too, Rick is very compliant and has a great attitude about everything.... NEVER COMPLAINS! It does scare me though to witness his skipping up to 6 breaths at a time. I poke him and he breathes again. I don't stay awake to watch though. He has another sleep study done in January, and a diaphragm test. I know he needs the ST bipap but so far no dice with getting one. We have to hang in there and be thankful for small favors! He doesn't use the bipap in the daytime unless he takes a nap, of course. M
 

Michael Blue

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Skipping breaths?
Sounds like Central Sleep Apnea...He may find with his next study that he needs one of the ASV, BiPAP AutoSV, etc. modes in order to releive that.

Should help a lot, if you can get it done, I know all labs are different and some aren't even using those mdoes yet.

~M
 

mndireland

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It took my mam a long time before getting used to bi pap, she still has problems with it, if she feels an anxiety attack coming on she cant use the bi pap. She also suffers clostrophobia. What we do is turn the machine on first then let her hold it and put it to her face until its comfortable, then strap it, we sit infront of the television with her favourite programs, and she slowly relaxes, we all talk as normal around her and she can nod and listen which soothes her. Also i find once im in the room and watching her she is ok, its the fear of being on her own that makes her worse, sometimes she feels suffocated and needs it off, so just being there helps her relax. She also has a humidifier, which sprays water so its not so bad or dry in her mouth, dont know if this can help your friend?
 

Michael Blue

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How was her pressure set?
If she's feeling suffocated, it's likely her pressure is too low.
~M
 
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