Cpap vs BiPap

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maypema

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Hi,
I have several questions but I'll send then in different emails.
Is there anywhere I can find a very clear, well documented, side by side review of Cpap vs BiPAP use with ALS? Today the pulmonary dr. mentioned we could use either cPap or BiPAP and my understanding has been that only BiPAP was used for ALS. I am looking for some form of written research I can actually take to the pulmonologist.
Thanks!
 

CindyM

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Hi maypema, as I understand it, a cpap forces air in, while a bipap helps the patient breathe in and out. Is the pulmonary connected with an ALS clinic? You don't want to get a machine that helps you take air in if you also need help getting it out!

I think there is another thread that discusses this in more detail. If you type in CPAP in the search engine at the top of your screen on this site it should come up. If the clinic recommends using a bipap, there's a lot of good advice on this machine as well. good luck and let us know how things work out! Cindy
 

maypema

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BiPAP/CPAP

Thank You Cindy, we are switching pulmonologists.
 

Al

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I'd recommend switching too. If he doesn't understand the contraindication's of Cpap in ALS then he doesn't know enough about ALS to be treating your patient.
AL.
 

Barbie4

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cpap

My husband has a c pap machine for his sleep apnea and it has really helped his snoring, but I have only heard of bpap machines for ALS>

Barbie
 

lunarruna

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Not only do you need a Bipap and not Cpap--you need a Bipap S/T, and any RT or ALS would know this. S/T refers to 'spontaneous vs. timed' and has to do with the machine picking up with a timed 'breath' when you dont.....
Insist on this...Good Luck, Beth (CALS to hubby Shannon, diagnoseded 8/04)
 

fussbudget

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bpap

my husband's doctor just wrote a scrip for a bpap. but now they want to know maximal inpiratory pressure. i think his are going to be too "good" as they want it to be 60. tom's is still 80. i pressured the doctor into the scrip; is there such a thing as getting a bpap too soon?

my husband has bulbar onset als, and is getting more and more tired.
 

rose

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Fussbudget,

Is your question if the insurance will cover the cost if his breathing is still above 80? My fvc was in the mid 80%'s, but I had so much soft palate weakness that I needed the help for when I slept, so it was bulbar cause, rather than respiratory muscles. The insurance did require I try the CPAP first, and it was horrible. I attended an overnight sleep clinic, at a local hospital, and the apnea was documented, but even though the sleep clinic doctor was aware of why I had the problems, he told my doctor that wanted me to have the bipap, that I needed to fail a cpap trial before I was eligible for the bipap. (my diagnosis did not figure into it for insurance purposes) So, I did try it, and it was just awful. I could not get rid of the extra air when I was breathing out, it went down into my stomach and clogged my ears, blew open my mouth.... BUT after I gave it a valient effort for a few weeks (can't remember how many) I was sent back to the sleep lab, and titrated for the bipap. It is a huge help for me with sleep, as I was having severe nightly headaches due to soft palate closure.

It ought not have to be this way for the insurance, but I believe you are correct that the daytime breathing needs to be below a certain point before it qualifies. Don't take what I say as gospel though, as I'm not completely sure.

I do not think there is a such a thing as getting the bipap too soon from a health standpoint.
 

DgtofTNfan

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Maypema,

My Dad was in the hospital for PEG placement and found he had aspiration pneumonia. This was a small hospital and the pulmonologist wanted to put him on CPAP. I asked a bunch of questions but she assured me the CPAP was "better than nothing" while waiting on a sleep study for the Bipap. I did some research and called a friend of mine who is an RT and learned CPAPs can be detrimental for ALS patients. When I returned to the hospital the next day, I was armed and dangerous with information. Apparently, I was thought provoking as the Pulmonologist had already changed her mind and found a company to provide a loaner bipap.

My next quest was to talk to the RT at the hospital about training and use of the bipap as well as some pulmonary exercises for my Dad. No help there either. The 2 RTs I spoke with barely knew how to use the machine. Fortunately the medical equipment company was knowledgeable and Dad had a smooth transition.

I learned quickly that professional experience with ALS is limited and we need to make sure he has access to the right staff to be able to help him.

fussbudget
My Dad's FVC is 66% and he has a bipap. The sleep study proved NOTHING to help justify the bipap (rather than just oxygen and the CPAP) and I was afraid they were going to come and get the Bipap. However in the ALS clinic, he did a MIP - maximal inspiratory pressure and MEP - maximal expiratory pressure. Dad's MIF was low. I don't know the number but the RT said that qualified him for the Bipap. Shewww! Dad was not sleeping at night before the bipap and now he is getting about 8 hours sleep a night. I would discuss this with the RT at the ALS clinic to best determine if your husband needs/would benefit from having the bipap now.
Dana
 

GlenBrittle

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Maypema,

I did some research and called a friend of mine who is an RT and learned CPAPs can be detrimental for ALS patients.

Dana
Dana, would you be willing to share that info about CPAP being bad for ALS ? I have 7 years of CPAP use , and 7 months of ALS fun.

Glen
 

DgtofTNfan

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Glen,

First I hope I did not offend you as obviously I am still learning here and you must be doing well with your CPAP.

My Dad has bulbar onset ALS and his first symptoms were swallowing, speech and breath support problems so this is the perspective I was looking for when trying to help my Dad get the services he needs.

In regards to my Dad, probably the most useful info I received was from my friend who is a RT. She discussed that PALS have a difficult time with the exchange of gases (oxygen and carbon dioxide), especially in the supine position. She explained (as I understood it) that a CPAP machine will force the lungs to inflate with oxygen however weakened lung muscles can not force the carbon dioxide out back past the continuous pressure. The PALS has to work against the machine and could continue to retain carbon dioxide. She explained this could do more harm than good due to the stress of working against the machine.

The ALS Family Guide provided to my Dad by the ALS clinic actually states.. "It is important to use bipap and not CPAP. The bipap has 2 pressure settings, higher when you breathe in and lower pressure when you breathe out. These pressures can be set individually. CPAP just has high pressure. ALS patients can not tolerate CPAP. "

The information I read on the internet were similar to above. Here are a couple of links that are not medical by nature but were some of the information I absorbed.

"A CPAP (continuous positive airway pressure) machine is not indicated in ALS. CPAP increases the work of breathing by forcing the user to exhale against resistance. This can be dangerous for those with ALS"

http://www.als-mda.org/publications/everydaylifeals/ch5/

"People with ALS should not use CPAP (continuous positive airway pressure) machines because this increases the work of breathing out. CPAP is used to treat obstructive sleep apnea, rather than for neuromuscular disorders where "assisted ventilation" is needed."

http://www.alscareproject.org/respmgt/nasal-ventilation.pdf

"Continuous positive airway pressure also shouldn't be used for respiratory muscle weakness and hypoventilation. CPAP doesn't provide sufficient inspiratory assistance, and it increases the expiratory work of breathing. CPAP is useful for ALS patients with sleep apnea, without respiratory muscle weakness and hypoventilation."

http://www.alsindependence.com/Treating_Respitory_Problems_in_ALS.htm

The above information concerned me and prompted me to ask questions to make sure my Dad received the right help for him.
Dana
 

GlenBrittle

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Dana , no offense taken. None at all. Its all in the attitude. Being a car guy , sleeping with 11psi of boost every night just makes me run better. !

That information is very interesting and I will bring it up with the pulmonologist at my May visit. He does both pulmo and also has a sleep apnea clinic which is handy. It will be an interesting chat.

Since I was still sucking in at 96% and blowing out at 91% (which I think is low because they couldnt keep the mask on me) they felt that CPAP wasnt a problem.

Just keep speaking your mind. It works better that way.

Thanks
Glen
 

CindyM

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I had to really advocate for my bi-pap. But once I had it, it made all the difference. I have more energy during the day, and more strength! It is worth the effort to get someone who will listen, IMO.
 

fussbudget

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We are working our way through the system. Our doctor has given us a prescription for the Bi-Pap and is writing a letter saying that it is medically necessary now. Hopefully he will have it soon.

I am thankful I called our insurance company before we paid for the uncessary Sleep Apnea test. We were told we only need the scrip and a note from our dr.

I've been reading up on Bi-Paps. Does anyone have thoughts on Spontaneous vs Timed, or should we ask for both.
also should we ask for a heated humidifier?

Thank you all so much for your help!
 

joelc

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I've been reading up on Bi-Paps. Does anyone have thoughts on Spontaneous vs Timed, or should we ask for both.
also should we ask for a heated humidifier?


I am very glad you are getting a bipap, it will help a lot.

The humidifier is an essential piece of equipment so you should insist on one.

As far as spontaneous vs timed, all the bipaps I have seen have these settings and your RT will set that up for you.
I used the spontaneous setting and was comfortable.
 
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