BiPap

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joni51

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Sep 8, 2010
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992
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Lost a loved one
Diagnosis
10/2010
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State
Al
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Valley
I am trying to get Bruce to use his bipap, but he says it makes his throat dry.. I put some water in it, is there anything else he could do? He also coughs all the time, he is bulbar so is this normal? I am lost to some of this and just want to help him..he has headaches some and I think it could be from not getting enough air or something.
 
This is part and parcel of ALS. The coughing, the headaches, etc. In addition to the humidifier with the BiPAP, try using a humidifier in the room also. As I've suggested before, a nebulizer will help. Does Bruce use an LVR to help with coughing - it would make him cough and perhaps clear his throat for some relief. But Bob coughed quite a bit later on. The headaches most likely indicate C02 retention which makes the use of the BiPAP even more necessary. Tell him for his own comfort and good, he has to use the BiPAP, especially now. Yasmin
 
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Is he using a nasal mask or full face mask?

I found that the nasal mask dried out my airways. The full face mask keeps everything moist.

Good luck
 
I'd like to add that earlier in the disease - maybe 3 months before Bob died, he started coughing just at night and the doctors at the ALS clinic suggested he might have reflux and told Bob to have a Tums just before he went to bed. We added that to his meds and lo and behold - it actually helped! If only everything were so simple! Take care.
 
Thanks Yasmin, I have a humidifier, and will plug it up too. The mask he has has straps at the top around the head,goes in the nose and straps under the chin Richard . He used it for about 10 minutes today. He has a cough assist machine he does use. I will see if I can get a tums down him too.
 
Try turning up the humidifier part of his bipap to a higher setting. Most machines have settings from 1-5, I've had to set my humidity higher to keep pace with air pressure settings as they increased. Maybe set it to 4 and see if it helps. If he starts getting condensation in the hose to where it starts dripping on him, keeping the hose warm by either using a hose insulator (home made or store bought) helps a lot. Even tucking the hose under the blankets makes a difference if he's using it in bed.

Also - surprisingly-tap water, if you use this, is very drying. I think it must be the chlorine (or whatever) that's in it. Distilled is what should be used, also, reverse osmosis is fine.

In a pinch we've used bottled spring water, extended use will damage the machine due to mineral buildup, but, its more moisturizing than using tap, and using it for one or two days until you can buy distilled water will not hurt the machine.

Does the chin strap keep his mouth closed?
 
You know Rose come to think of it, his mouch is open, should it be closed? I will get some distilled water tomorrow.
 
Yes, it has to be closed for the air pressure to be correct for bipap, and of course will cause dry throat and mouth. I know its all so much to assimilate, and sometimes nothing stays constant long enough to get a good handle on it before something else arises, but, if you can work on getting bipap straightened out, it will help Bruce feel better all the way around. You are correct that his headaches may be coming from inadequate air exchange. Most of the time is is a build up of co2 that causes the headaches.

I know tomorrow is a Saturday, but consider putting a call in first thing tomorrow, to the provider that set him up with the bipap equipment, and explain that his mouth does not stay closed, even with the chin strap. Explain he's having headaches, and ask if they can get a full face mask out to try asap. Depending on your circumstances, it might speed things up if you, or someone you can ask, can drive out and pick up the mask. They are bound to have something in stock at their storefront. When I've had problems with my machine, it invariably has fallen on a weekend, or holiday, or, last time (as an extra special bonus for us all) the night after I had surgery, on a weekend, when the RT we deal with was several states away, and the guy covering for him could not be reached. How fun is that! The pharmacy was closed, and our RT actually called and had the pharmacist drive out and meet my son there to give him a new machine for me to use. I'm telling you this to help illustrate that home medical equipment companies are accustomed to working with patients that have needs outside of regular business hours.

Don't let the term "full face" put you off, it just means the mask fits over his nose and mouth, so it doesn't matter whether or not his mouth is open or closed. Many bulbarians need to use this type.

Good luck, stay strong.
 
Joni,

One more thing; if Bruce has an older model BiPAP AVAPS machine by R.esperonics (like how I spelled that? I WILL beat the moderation software gremlins!) - anyway, if he has this type of machine, the humidifier has to be turned on separate from operating the air flow function. You can either turn it on beforehand to warm the water up, which is a nice feature, or turn it on after you power up the machine.

To turn on the humidifier of this style machine, hold the upper arrow button that says "heat" on it, until you hear a beep, and a little green light on base of the front of the unit will come on. With that same arrow button, once the light has come on, you can keep tapping it to change the level of heat. Use the up (heat) or down (ramp) arrow to adjust more or less heat. Then, either do nothing more, or, if you like, if its dark in the room, and the light of display screen is annoying, you can press the oval "silence" button, and the display light will turn off. It will go off after a few minutes on its own anyway.

If he has a different style machine, ignore the above 8)
 
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Joni, I use nasal pillows and a chin strap, but if I dont use the humidifier my nose dries out and I even get nose bleeds. I may switch to a nasal cone as even the pressure of having the pillows up my nose starts to hurt after a while. I have to work my way up to a full mask as I am claustrophobic. Love you and praying things work out so he feels comfortable using bipap. It has helped me so much!
 
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