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Oct 11, 2006
Friend was DX
My friend J can't adjust to bipap...Facemask just doesn't work, too drying at first then too much humidity, feels like he is going to choke. Didn't like nasal pillow the first 15 minutes of trial, and no one has tried plain nasal mask...No one is even encouraging him to try the nasal routes again at all, though the full face mask is absolutely a failure. Anyone else had problems like this? Are some people unable to use bipap at all? What then? I'm really worried. He has a sleep study coming up, but what good will that do if he won't use the machine anyway?


My first thought is that perhaps it's anxiety that is creating some of his issues with the bi-pap. Is Ativan an option to help him become used to it, enough that he'll see the benefits of using it?
How did he get bipap if he hasnt had sleep study yet?
When i first started on bipap i hated it. I have full mask.I felt like i was being smothered,but after a few nights i loved it. Tell him keep trying it and give it a chance.
Good luck


hi. ive had mine 4 months and just todat it got adjusted to a comfortacle level. when i got it it had standardized type felt like my face was fillimg w air ad i coouldnt breathe fast ennuf to keep up.anyhow guy came to my house and we just kept adjusting til i felt at ease. lo pressure, shortt in duration etc. i used it all afternoon while watching tv. it felt good. it is a type of nasal pillow. dont know if i will actually mmake it thru the night, but at least i can breathe with it.maybe your friend can try during day and get it adjusted to an easy way.
Hi Pam. I have had a Bipap since Jan of 05 and it took some getting used to. I went to a Rehab Center and no it wasn't a drug rehab center for you wiseguys that are going to ask!.
I was there 5 days and for the first couple of days we tried different masks (full face and nasal) during the day. I was encouraged to try sleeping in the afternoon with different masks. I used them at night and had the Co2 and O2 monitors on to see what my levels were at rest. After I found a mask that I was OK with I was sent home and had to come back 3 months later for evaluation for 1 night. You can't just slap a mask on someone and say Breathe. I had to take 1mg of Ativan to overcome the feelings of anxiety and semi claustrophobia. It is not easy but with the proper approach it can be a blessing and help to keep you alive. As for the humidity level I find I have to adjust it up or down according to the room temperature. Depending if the air is on or the furnace makes a difference. AL.
Can't use BiPAP?


You will just have to convince J to keep trying. Get a Pulmonary therapist to adjust the settings to a comfortable level. I was prescribed a BiPAP at my first ALS Clinic. No sleep test just a FVC. I chose the Mystic Swift Nasal Mask. It was the least intrusive and allowed me to wear my glasses. I wore it for a couple hours each of the first few nights. I then felt comfortable enough to sleep with it. I have found it to be very helpful in making the days better. I have been getting a tightness in the chest later in the day as I tire. The last couple of days I have taken to putting it on for a while to rejuvenate. I've found it difficult to talk with it on. I hope that J can adjust, I am sure it will make life better.

Thanks, all, for your advice. J was prescribed the bipap because of 40% FVC. He.has had his bipap for a month or 2 and has struggled with it nightly. His mask fits fine and he says he is not anxious about it in particular. Only that if the humidity isn't too high he feels the need to cough and can't with it on, so he takes it off, coughs and drinks water, then with it back on feels like the air is pushing moisture down into his lungs. And when the humidity is higher, he feels like he is breathing underwater. Either way, he ends up using the machine at most 30 min a night, then taking it off and sleeping on his side for the rest of the night. I really think he should be trying other masks and will push for it, but he has to be willing. Problem is his other medications really zonk him, so he goes to sleep really easily without bipap and may not know he needs it. I guess the sleep study will tell him what's what...Though whether that will help, I dunno.

Hi Pam I don't want to scare you but with a FVC of 40% and falling asleep easily I would bet that J's O2 level drops like a rock and his CO2 level is higher than normal. This makes it easy to just quit breathing in your sleep. 90% of ALS patients pass in their sleep from stopping breathing or choking on phlegm. Try to get J to use the mask in the day while watching TV or reading and he might get used to it more. Different masks might help too. I can cough in mine and talk on the exhalation cycle. I've had almost 2 years of practice though. Hope this hasn't scared you and helped a bit. AL.
Hi Al,

Can this be true even if his O2 is 95% during the waking hours? That's what it was when it was taken at the pulmonologist's office. I don't understand how his FVC can be so low and his O2 so high...What is the difference? And which one matters more? I will try to get him to use the bipap at home during the day, if I can, gently explaining why, but I have a feeling he will be stubborn and not listen to me, as I am not a doctor. His sleep study is after T-day so maybe then he will do something about it. Only hope it won't be too late.

Hi Pam. My O2 sat is 95-97 during the day but drops to the low to mid 80's lying down because you breathe shallower and do not take in as much oxygen. You do not exhale as much so do not blow off the carbon dioxide. The Bipap keeps the pressure up as if you were standing or sitting and allows more O2 to be absorbed into the blood. The FVC is just a measure of how forceful the lungs are to breathe in quickly and blow it out as long and hard as you can. It tells them how much muscle is left to assist with breathing putting it in simple terms. His sleep study should help convince him that he needs the Bipap. Good luck. AL.
I too, am having a terrible time sleeping with the bipap. I have a model with thin straps that go around my head and the nose plugs are held up by the tube that comes up from the machine. There is a chin strap that I find uncomfortable but, without it my mouth drops open. I see some of you are taking a anxiety pill. I take menetonin to help me sleep this works but, in two hours I am awake because I am uncomfortable. I am sleeping on two pillows on my side. Would I be better off sitting up? I feel like I am going crazy.
Hi,....I, too, use the Mystic Swift nasal mask. If not for the people on this forum I probably would have chucked it long ago. I take xanax one hour before bedtime. Some nights I make it all the way through the night and the next day feel great. Other nights I have difficulty and make it only three or four hours. But it's better than nothing. I read research that said if you can use it at least fours a night it will extend your life and I believe that sincerely. Here, on this forum, I got the wonderful support I needed They said to keep trying and I did. It was hard as I am claustrophobic and have a high anxiety level but it worked. I want as much good quality of life time as God gives me. Tell your friend to hang in there. He will be in my thoughts and prayers. Sharon
I have a question about a bipap Does anyone that is using one find that they have to use is less and less or more and more. I am in a study using a bipap before you need one ,,and will it keep you alive longer. I just dont want to be depentent on this machine because my lungs are getting used to it. Or should I wait until I need it and forget the study Pat
Interesting question, Pat. I'll be watching to learn what others have to say! Cindy
Hi Pat,

The general idea is that your breathing muscles get to rest during the hours you are using the Bi-Pap, thus extending their useful life. This seemed to be true for me, although there is no way to know for sure. ALS progression will cause degradation of breathing function at some rate regardless of Bi-Pap use.

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