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?

Thanks,

Pam

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

PaulaB

hi. ive had mine 4 months and just todat it got adjusted to a comfortacle level. when i got it it had standardized type setting.it 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.

Pam,

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.

Rich

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.

Pam

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.

Pam

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.

Mike

I've been on it for sleeping only or lying down for 2 1/2 years.
AL.

My mom has been experiencing breathing problems since the beginning of June. She has been on a steady decline. She was just recently given a bipap machine and did try the nasal mask which she really hated. It was too difficult for her to put it on and take it off. She felt the air was blowing in her eyes and therefore she would not use it at night. She now has the nasal pillows. What a difference. This is her sixth night sleeping with it. It appears that her breathing during the day is not laboured like it has been. She is still unable to exert herself because her breathing will get very loud and difficult to breath. It is sad to watch her because she is still very mobile and her fine motor skills are excellent. However, the bipap machine might buy her some more time. I encourage everyone to give it a good shot. It may take sometime to get use to but I think it might help in the long run. God Bless everyone on this site. Anne

Hi Pat,

I don't know, of course, but my friend Joe is on a vent right now and they are trying to wean him OFF it during the day, afraid he will get too used to it early and not be able to breathe without it before he truly needs it. I wonder if using the bipap early might not be like that: if you rest your lungs, you might be letting them -- more your diaphragm muscles -- get deconditioned rather than actually being restored. Since a muscle works better the more it is used, it only makes sense to use your own muscles to breathe for as long as it is possible before resorting to a machine.

Remember, though, that this is only my opinion, and based on what I know about vents and breathing. Hope my two cents helps you make some decision, but that you base it on a lot of two cents from everyone!

My best to you,

Pam W

Yes muscles work better the more they are used in a person that has the ability to regenerate muscles which ALS patient's don't have. In our case if you overuse it you lose it. Resting the lungs and diaphram is a good thing for breathing compromised patients.
AL.

Thank you Al. That clear it up for me. I found the Bipap very comforting for me .Pat

My mother in law was told that if she used it too early she would become dependant on it...i didn't understand why they would tell her this..
Al and others who are taking/took an anti anxiety medication before using the bipap...do you still need to take a drug or do you get comfortable with the machine over time?

Jodie

For Anziety And Claustophobia Ativan Works Great For Me I Woul D Not Be Able To Stand The Mask Or My Life Wthout It . My Medicare Rental Supply Brought Severall Different Masks Until I Was Comfortable. One Of My Masks I Was Wearing Up Side Down Lol
Jan Franks

I have read alot of people taking anti-anxiety medications but from my understanding that medication can supress your breathing and is not a wise idea to be taking it if you have breathing problems. Can someone clarifiy this for me. Anne

My doc's say 1mg or even 2mg won't hurt me but more than that of Ativan is not good becase of being too relaxed sleeping. I'm about 215 lbs. so that could be a factor too, the weight of the person as well as their breathing numbers.
Jodie. Was it an ALS experienced Pulmonologist that told your mom in law that?

I Will Not Take The Time To Go Back And Reiterate My Husband's Dx With Als, Etc., As Most Of You Steady Posters Already Know It. His Breathing Capacity Has Gone From 105 In Feb. To 55 In July. He Has Been On The Bipap For Several Months Now, And It Has Saved His Life. Is He Uncomfortable??? You Bet He Is!!! But He Wants To Live Every Moment The Good Lord Will Allow.

He Went Back To The Als Clinic In Nash. Friday, And They Do Not Recomment The Trach And Vent For Him. You Have To Have Round The Clock Caregiving With The Vent At About $20 An Hour, And Who Of Us Can Afford That????

I Am His Only Caregiver So The Dr At The Clinic Is Having His Bipap Changed From 'helping Him Breathe' To 'breathing For Him'. This Will Change Everything For Him, It Will Probably Have To Be On 24/7 And No Talking Etc.

The Dr. Also Told Him To Have A Feeding Tube Surgically Inserted Within The Next 3 Wks Altho He Can Still Eat Easily On His Own At This Time, But Since His Breathing Capacity Is So Low, 55, And Dropping Rapidly, They Say He Could Not Survive The Surgery In Another Month.

Does This Answer Anyone's Questions? To Those Of You Who Wrote In To Say The Als Patient In Your Family Won't Use The Bipap Bec. They Dont Like It, Tell Them It's Better Than Dying.

My Heart Breaks A Little More Each Day Bec. I Know My Husband Cannot Last Much Longer.

Jackiemax