Ridge, I cannot imagine not having the bipap! You will feel so much better when you sleep. Better as in "refreshed" instead of like death.
I too have had more problems breathing out than in. It is usually the intercostal muscles (the ones located between our individual ribs) when they weaken, it causes this effect, and muscles in the throat area as well.
Even if your FVC measurement is not too bad, what you describe experiencing when you sleep means you're not getting enough air pushed back out, and that means Co2 will build up in your bloodstream. Gosh, even when I try to "sneak" a nap sitting completely propped up, its no time at all before I wake up feeling just awful because of that.
Yes, it is an adjustment to use it, but, do yourself and everyone who cares about you a favor, and get evaluated for it. You can ask for a referral to an overnight sleep clinic. They will monitor what happens when you fall asleep, and the doctor who works with that clinic can write you a scrip for it using sleep apnea for a diagnosis. However, it would be better to have the sleep clinic doctor send your results to the ALS clinic, or whomever is overseeing your care, so that you can start out with a prescription for a bipap rather than cpap machine.
If you've not had a full pulmonary evaluation, that is something very good to do. This will determine more accurately your FVC, and also, importantly your MEP and MIP (maximum expiratory and inspiration pressure)
If your FVC is not low enough to qualify you for insurance coverage with the ALS diagnosis, then, either using your MEP/MIP scores from a full pulmonary breathing exam, (and your ALS diagnosis) OR submit to a sleep study,and use apnea diagnosis for the prescription to get the machine covered by insurance.
However, if the sleep clinic doctor writes it for CPAP instead of BiPAP, you will most likely not be able to adjust, as its just one pressure of air all the time, it doesn't change when you breath in and out.
You can still get the BiPAP. The insurance will still cover switching to that type of machine, but, with a sleep apnea diagnosis, but you have to "fail" a trial of CPAP first, (a couple of weeks I think) and that is just miserable. "Fail", is their terminology for not being able to tolerate CPAP, and then you get the better machine. Starting out with an AVAP BiPAP machine is optimal though.
If you have health insurance, what type you have will determine how much you pay for it. It is billed on a monthly basis. And you start out "renting" your machine from a home healthcare company. The RT will come out to your house and fit you with whatever model is prescribed
(There are lots of older posts about types of masks, etc that you can do a forum search for to read)
I have Medicare, and they require that the patient "buy- out" the machine somewhere between 13 months -18 months after starting (I can't remember exactly) so that's a good thing, because it means you won't continue having an indefinite monthly co pay.
When I still had my COBRA private insurance, my copay was $20 monthly. When I switched to straight Medicare, it went up to $25, but then it eventually was paid off.
Good luck! hope this helps