Old 05-02-2011, 06:16 AM #1 (permalink)
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Default BiPap, to be or not to be

I have Bulbar ALS and i'm considering a BiPap. I breathe fine except at night when sometimes I have difficulty exhaling, when the air in my throat makes a groaning sound. Never have a problem inhaling. I wake up 3-4 times a night which makes me think is because of my breathing, not sure.

Does a BiPap actualy strengthen your breathing muscles and how hard is it to get used to? It looks very confining. Best place to buy one?
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Old 05-02-2011, 01:18 PM #2 (permalink)
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Default Re: BiPap, to be or not to be

My husband is also bulbar but will not use a BiPap. It does not strengthen your breathing but allows those muscles to rest, therefore hopefully to slow progression. You should be seeing a pulmonologist (at the ALS clinic) who can test your breathing to determine when you should begin using a BiPap. The doctor can also prescribe it and refer you to the provider of BiPaps.

My husband has tried the BiPap many times and will not get used to it. I have read and been told it is best to get used to the BiPap prior to actually "needing" it to help the transition. Also, I watch his breathing and he has extreme apnea - at times for about 45 seconds after about 6-7 breaths and it doesn't wake him up. It sounds like you may have some obstructed breathing which is very normal but a doctor would have to tell you for sure.

You may get more responses if this were on the PALS sub-forum.

Stephanie
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Old 05-02-2011, 01:26 PM #3 (permalink)
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Default Re: BiPap, to be or not to be

If you want to increase your life span...DO IT!

But you need to consult with a respirologist
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Old 05-02-2011, 02:51 PM #4 (permalink)
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Default Re: BiPap, to be or not to be

Hey Ridge
You definetly need to have your breathing volume tested ,either by a pulmanary Dr. or respatory therapist at ALS clinic.
With this done they can tell what % your are breathing .When they have your numbers they can program your Bipap to best suite you.
As far as getting used to thats hard to say everyone is different me it took about 2 days.
when it comes to price anything medical is high ,medicare helped with mine.
When it comes time to get one go with a comnpany that has a respitory therapist on staff that will come to your home and set it up.
I see you are from Seagrove Beach Isn't that west end of PCB.? Do you attend a support group down there?
Jeff
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Old 05-02-2011, 10:36 PM #5 (permalink)
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Smile Re: BiPap, to be or not to be

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

Last edited by rose : 05-02-2011 at 10:43 PM Reason: typos
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Old 05-05-2011, 05:04 AM #6 (permalink)
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Default Re: BiPap, to be or not to be

Quote:
Originally Posted by jeffro View Post
Hey Ridge
You definetly need to have your breathing volume tested ,either by a pulmanary Dr. or respatory therapist at ALS clinic.
With this done they can tell what % your are breathing .When they have your numbers they can program your Bipap to best suite you.
As far as getting used to thats hard to say everyone is different me it took about 2 days.
when it comes to price anything medical is high ,medicare helped with mine.
When it comes time to get one go with a comnpany that has a respitory therapist on staff that will come to your home and set it up.
I see you are from Seagrove Beach Isn't that west end of PCB.? Do you attend a support group down there?
Jeff
Thanks Jeff, Yea I participate in a group of about 10 local ALS patients. We do a once a month conference call.
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Old 05-05-2011, 05:09 AM #7 (permalink)
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Default Re: BiPap, to be or not to be

Thanks Rose, big help.
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Old 05-06-2011, 01:50 PM #8 (permalink)
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Default Re: BiPap, to be or not to be

Hi Ridge

If you have not already done so--please register with the ALSA people here in Florida. Their counselors are very helpful. The chapter in Florida also has a lending closet to help with necessary items.

Their counselors are available for phone calls--and at least in my county--will also come out to your home.

They can also help set you up with an ALS clinic if you aren't already seeing one. I believe there are several here--Tampa and Jax definitely have them.

As Rose said--your insurance should cover the majority of costs associated with the BiPap. I'm surprised your docs haven't already had you to see a Pulmonary specialist already.

Poor breathing can cause a lot of problems with your overall health--making you not feel fully rested. It can also cause some pretty bad AM headaches as well.

I know a lot of PALS use the Bipap only at night or when napping. It's always a good idea to become familiar with new equipment before you actually "HAVE" to use it. If you're totally unfamiliar with them, there are likely some videos on YouTube--I know there are several on the Cough Assist machine.

Best of luck with it. The bottom of this page also has links to others that have posted about the BiPap which may answer some questions for you as well.
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Old 05-30-2011, 07:17 PM #9 (permalink)
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Default Re: BiPap, to be or not to be

It only took me a few nights to get used to the bipap and I really am glad I have it! Don't wait!
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