Old 01-19-2017, 06:04 PM #1 (permalink)
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Default What are the symptoms that indicate need for a bipap?

I'm having a problem with elevated heart rate. It's usually okay in the morning but gets up to 95 to 99 in the evening. My PCP has increased my B/P medication, and this has helped a little.

The only times I am short of breath is when I am exerting myself--getting in and out of bed, getting up off the couch, etc.--but this shortness of breath is momentary. I don't have a problem breathing at night that I'm aware of. I do have chronic sinusitis and have started wheezing when excessively tired. I had a sleep study about four years ago and passed. The pulmonologist recommended that any future testing be done with the oximeter that clips on the finger, as I cannot make a good enough seal with my lips to blow into the spirometer. I did the overnight oximeter test about two years ago and passed.

I've looked at the stickies but couldn't find the answers I was looking for. I have an ALS Clinic appointment coming up in about three weeks and will discuss this with my neuro then.

My concerns with getting a BiPap are 1) how much maintenance the thing requires--cleaning, etc. 2) does it ruin teeth by drying out the mouth like a C-Pap 3) how does one work with sinus issues 4) cost

Any information anyone can provide will be greatly appreciated.
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Old 01-19-2017, 06:30 PM #2 (permalink)
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Default Re: What are the symptoms that indicate need for a bipap?

The overnight oximeter only measures oxygen levels. The main concern with motor neuron diseases is carbon dioxide buildup and that will not be measured. That said, with your other issues, you might have low oxygen or some kind of COPD (asthma, etc.) Being out of breath can be a result of many things including obesity, pulmonary hypertension, or just being inactive.

I would discuss all this at your ALS clinic appointment. They should be able to sort it all out and do the necessary tests (maybe arterial blood gas, etc) that will show exactly what you need. I would not worry about ruining teeth. Bipap machines come with heated humidifiers and other gadgets that should minimize that worry.

Regarding your cost, you'll have to ask your insurance company. I don't know what kind of plan you're on but your plan will dictate how much will be paid. I have Medicare and a supplement and my Trilogy and all accessories are paid 100%, no questions asked.

Your clinic can also work with you on what kind of breathing assistance you need.

Best wishes.
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Old 01-19-2017, 10:49 PM #3 (permalink)
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Default Re: What are the symptoms that indicate need for a bipap?

Thanks for the reply, Kim. It was very helpful.
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Old 01-20-2017, 12:33 AM #4 (permalink)
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Default Re: What are the symptoms that indicate need for a bipap?

1) The maintenance is virtually nil (brochures that mumble about daily/weekly cleaning to the contrary)

2) As Kim said, even CPAPs have humidifiers so if you had or knew someone with a dry mouth, they had a dirty air filter, an overly dry room, the wrong settings or never used/rinsed out their humidifier over months or years. You do need to use distilled water, which costs about a dollar for a gallon.

3) The settings can be adjusted for sinus issues. My husband had a deviated septum and cysts secondary to his connective tissue disorder. And he'd lost 40% of his lung capacity to Marfan, years before ALS.

4) With UMND, at this time, you probably don't need portability in your BiPAP, so there should be no issue with reimbursement so long as your doc knows how to document the indications for BiPAP. You could also buy your own machine gently used from a reputable site like SecondWind against the probability that you will never need the much more expensive and heavier Trilogy.

Best,
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Old 01-20-2017, 04:37 PM #5 (permalink)
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Default Re: What are the symptoms that indicate need for a bipap?

Thank you, Laurie. I was very concerned about maintenance, because I had heard the units require daily cleaning, and I am afraid I couldn't do it myself. I had no idea humidifers were a part of C-Pap and BiPap machines.

Thanks again for the valuable input. I really don't think I need a BiPap but will not be afraid to discuss it at my next appointment now that I'm better informed.
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