Difference between a Cpap and Bipap?

[trying to stay positive]

Hi. I hope everyone had a good holiday. I had a question about the Cpap and Bipap machines. My DH (DX 8/07) went for a sleep study (they are aware of his DX) and they told him he has sleep apnea & needs a Cpap. It seems to me from reading posts here that Pals are generally on Bipaps. Can anyone tell me the difference between the two as they relate to a Pals? Thanks so much as always for any input.

Linda

[Al]

Hi Linda. Usually a bipap is used if the person has diminished breathing capacity due to deterioration of the chest and diaphram muscles. His pulmonary function tests would show that. Also during the sleep study if his CO2 levels were high assuming they were being checked he would need a bipap rather than a cpap. The cpap just blows air into your throat to keep your airway open (simply stated) The bipap blows in a set amount then cycles allowing you to exhale but keeping a bit of pressure to keep your lungs inflated. It does depend on the individual but some Pulmonologists don't have any experience with ALS. I had a guy treating my sleep apnea before my Dx but when he found out I had ALS he dropped me like a hot potato and told me to see the guy at the ALS Clinic. I hope this helps. Ask the doc how many ALS patients he's treated.
AL.

[Marjorie R. Wilcox]

My husband has a Bi-pap machine for his sleep apnea... has had it for over a year. It is wonderful. He now gets recuperative sleep and I don't worry whether or not he will take his subsequent breaths. Sometimes the mask gets crooked and air escapes, but I just give him a nudge or fix it myself. We snuggle up to it each night and thank God for it. We recently found out he has ALS. The symptoms are very minimal right now.... not noticable to the regular onlooker. He was also in an explosion this summer that has caused him to have to have bone grafts in his leg. He is still hopping on one foot with a walker until probably spring..... but nothing is going to damper our happiness in each other!! We have known each other 55 years and are now newlyweds of 15 months. If you feel old, then just don't look in the mirror! Marjorie

[nspoc]

Hi Linda -

I, too, live in suburban Chicago, although far from you. PLEASE go to an ALS clinic. The first thing I would do is call the Les Turner ALS Association - 847-679-3311. They have a home care team that will come and talk to you about your needs - and continue to follow up with you, no matter who your health care provider is. They have a huge number of resources to help you, an equipment pool, grants for equipment, respite grants, and so much more. My experience is that they are THE BEST - and I have consulted in health care since 1981, all around the country.

They are associated with The ALS Clinic at Northwestern in Chicago. That clinic has a premiere pulmonologist dedicated to the clinic, and also board certified in sleep medicine (among other certifications). She is dynamic, encouraging and thoroughly knowledgable and committed. We got our bi-pap there on our first clinic visit - standard if your forced vital capicity is in the vicinity of 50%.

I could go on and on - but suffice it to say that bipap (and early nutrition intervention) are the ONLY two things that have added time to the lives of PALS, and they add quality as well.

Don't fool around with CPAP - I question the guy's knowledge who told you about that.

Please Private Message me - and I will tell you so much more - I will even give you my phone number. We have been to three ALS clinics, all were knowledgable and competent - but the set-up we are in now blows them all away.

Don't waste any more time - Check out the Les Turner ALS Foundation at www.lesturnerals.org.

BTW - I have nothing to gain - just the CALS of a patient there - and the help we have gotten from them is life-changing.

Beth

[trying to stay positive]

Thanks you guys for the input. I believe I will call the als doc tomorrow (or Wed. if they are closed) and see what she thinks. They should have the 1st sleep study report by now. Asking the sleep study doc about his experience with als patients is good advice. I will do that too. My husband is not having breathing problems at present. His FVC was 89% at the end of Nov. The als doc wanted him to have the study because I told them about his apnea. So who knows....maybe a cpap is ok for now & a bipap will come later. I'll see what the 2 docs have to say. Thanks again. You guys are great!

Linda

[CindyM]

My ALS clinic started me on a CPAP, but I am not officially diagnosed with anything. He started me for the same reason as your hubby: I told him about my sleep apnea. After I went back on the CPAP, I am stronger in some ways. For example, my trunk mucsles no longer tremble to the point where folks ask if I am chilly. The CPAP was hard to get used to at first. It was too strong, I believe. But I did get used to it so that is a good thing. Means a lot that they haven't found trouble with my breathing.

I hope the CPAP works for your Husband as well. If not, I am sure the clinic will "graduate" him to a bipap. Let us know how this works out for you guys. You will be in my thoughts.

[trying to stay positive]

Hi everyone,

Thanks for all the replies. I thought I'd give an update. My husband is getting a Cpap - that is what the sleep study place felt that he needed - and will pick it up this Wednesday. His sister has one for sleep apnea, and she also said that it was hard to get used to. I hope my hubby will give it a fair chance.
Linda