Cpap? Bipap?

pvale · 10-31-2009, 11:19 AM

I had a sleep study at Barnes Jewish hospital Thursday night. The result of that was that I had over 200 15-30 second periods of not breathing when laying flat on my back over 4 hours, and 30 more when laying on my side. The result of that is they are ordering me a CPAP machine to be here sometime next week. I tried to explain to the Dr about ALS but he said I wouldn't need a BIPAP right now. My question is, knowing I already have other bulbar issues, like swallowing and speech problems, is weakening diaphragm muscles a natural progression of this? Do I need to put my foot down and insist on a BIPAP, so we don't have to buy 2 machines? Would using a BIPAP right now hurt me any if I only need CPAP?

Perry Vale
pvale at pvale dot com

GlenBrittle · 10-31-2009, 12:02 PM

YES , put your foot down.

I was on CPAP for a long time before DX , then my pulmo switched it to BiPap - so much better.

No , it wont hurt you. And you will be better prepared for the future.

Glen

rose · 10-31-2009, 12:14 PM

Bipap is so much better. Even though my ENT (who ordered study) tried to explain to sleep study doctor why I needed bi level, he insisted I had to "fail" cpap trial first. The cpap was very hard for me to tolerate, I could not get rid of all of the air blowing in, it was too hard fighting it to breathe out. It would clog up my ears, go down my esophagus (still does that sometimes) and I still got the headaches. Bipap was wonderful from the very first time I used it.

I don't know what type of insurance you have, but they should cover the switch from cpap to bipap if that's the route you have to take. I think for bipap to be approved without sleep study, the FVC has to be below a certain level. (I don't remember the specific number). At my last clinic visit mine was in the mid 60's, but, back at the time I was working on getting approval for it, my FVC was too high to qualify.

BethU · 10-31-2009, 12:17 PM

I second Glen ... BiPap won't hurt you at all, as I understand it. In fact, it manages what apparently is the big problem in ALS, balancing oxygen and CO2. With an ALS patient with a weakening diaphragm, that can get out of whack. And yes, pregressive diaphragm weaking occurs with ALS.

Also, make sure you get a BiPap with BACK-UP. That means that if you stop breathing for a certain period of time, the machine will initiate breathing. As I understand it, the BiPap (unlike the CPap) is responsive to the patient's own breathing. It doesn't impose a mechanical rhythm on you. So ... if the patient doesn't breathe, the machine won't. The back-up simply starts the process if the patient doesn't breathe for a predetermined time.

I've been fighting the insurance company for a year for this, and finally gave up. Mine was prescribed with back-up, the insurance company simply overruled the doctor ... without any notification to me that they were arbitrarily changing the doctor's prescription ... and the vendor lied to me when they delivered it. It took only a few minutes later on the computer comparing products to verify that it was the wrong machine, and an honest therapist several months later took one look and admitted it was not what was prescribed. He promised to deliver the right one the next day, and hasn't been heard from since.

So be prepared to fight for needed equipment. ALS is not understood by insurance companies, many doctors, etc., etc.

I am not qualified to give any medical advice, but I speak from sad experience.

joelc · 10-31-2009, 01:56 PM

Bipap is the right machine for you! Put your foot down!

h37skipper · 10-31-2009, 08:15 PM

I am surprised that some of you have had difficulty in acquiring the BiPap. Maybe because we began the whole process with a neurologist at an ALS clinic. It was the first thing he ordered when the bulbar onset was diagnosed(11/2007). We have had the normal problems with mask fittings and tried many styles. But it is the reason that we are sitting here watching TV together right now. We have a Respironics BiPap, the AVAP/S model - Features, BiPAP AVAPS, Philips Respironics . In conjunction with a Repironics cough-assist Maura has been able to postpone a trach. Hopefully for months to come.

tdamess · 10-31-2009, 10:20 PM

would a lung doctor really be the one doctor to see for breathing problems and he would order the right one... mine did for me and i do not have als

BethU · 11-01-2009, 12:24 AM

I was seeing a lung doctor anyway (follow up to resp. failure in 07), and he jumped in on the BiPap when I got my ALS dx. I told him I was being seen by a clinic team at UCLA and asked him to consult with them, as a professional courtesy if nothing else, and he said, "I don't have to," like I was implying he was unfamiliar with ALS. But he had all sorts of problems getting my insurance to accept his order with an ALS dx, which is probably why they disregarded his prescription and sent me the wrong model, since he had to put it through (finally) as a dx of sleep apnea, not ALS.

And that's also why I resisted his advice until I could verify his orders with the clinic team a couple months later. They had been courteous in consulting with my private cardiologist, and I thought the point of a team approach is ... . well, to be a team.

Sometimes it's more than you can handle fighting ALS and fighting the system, too.

Big Mike · 11-01-2009, 05:30 PM

I guess I have to slightly dissent on this one. I use CPAP for my upper airway resistance syndrome, which is unrelated to ALS, and I am doing just fine. It just depends on your particular situation and progression.

JOSIEM02 · 11-02-2009, 08:15 AM

This will probably sound dumb, but what is a cough assist?

paulw · 11-02-2009, 02:34 PM

We have a cough assist machine for my wife. It alternates between positive pressure in the lungs to negative pressure. My simple description would be that you blow up the lungs, and then suck the air out quickly. I loosens and secretions to make it easier to get it out of the lungs.

When it first arrived, they gave me a mask to wear so I could feel what it was like. I seems wierd, but it really wasn't an uncomfortable feeling at all.

We use it 5-6 times a day depending on her needs.

Paul W.

JOSIEM02 · 11-02-2009, 03:44 PM

Thanks Paul for the answer. My MIL has a suction machine, I wasn't sure if it was something like that or not.

pvale · 11-04-2009, 10:15 PM

Well, I have an appointment with another pulmonologist Tuesday, and will see then about getting the BIPAP with BACKUP. If I can get a ride lined up, that is....

Perry

hopingforcure · 11-05-2009, 09:13 PM

Perry,
Hope you can get a ride. Wish we all lived near each other, have a couple good family members and friends who would be glad to take you anytime. Darn if we were as close as we are on the internet. I think we would all spend so much time together.

pvale · 11-11-2009, 04:33 PM

Had my appointment yesterday with a pulmonary Dr that understands ALS. He had no problem with ordering a Bipap for me. Haven't heard from the medical supply company yet, but it's one we already work with for the wife's oxygen stuff. So I get to learn to use a bipap at night. Thanks everybody for the input/helpful advice.

Perry