Bipap machines??? What is it?

[mndireland]

Can anybody tell me what it is like to use these breathing or bipap machines? My mum got told today by the doc that they are bringing her into hospital to check her breathing during the night and they think its time she needs a machine for help, looking on the sites and listening to all you guys talk i think its a bipap machine, but dont know much about them. Ive seen pictures of them and they look big and scary, i dont think she will take to it too much.

[brendapals]

Hello dear,
I have been using a CPAP machine for about 4 years now for sleep apnea. The one I have does not cover my entire face-so it's not so scary. It has the little prongs like they have for oxygen use in the hospitals. The machine is set to a pressure that forces air to keep my airway open since I snore so much!
I haven't used it now for about 1 month- since I was dx with ALS. It seems like it is forcing too much air into my mouth or something.
I know the CPAP is continuous pressure, so I'm not sure what the difference is in BIPAP. I do know that for the 4 yrs prior to the last month, I felt more rested every morning after I had worn it the night before.
Hope this helps you some,
brenda

[gbrown]

The BiPap machine is a machine that helps you breathe easier and more deeply. I hace been on one for a year now and I use it for 8 to 10 hours a day. The only problem I have had is when I started they gave me a full face mask and I have a beard so it wouldn't seal properly. I now use the nasal mask and like it a lot better. My neuro suggested he wanted me to sleep with it on but I seem to breathe ok when I'm sleeping so I use it during the day. Some PALS use it 24/7 and I too, will eventually.

PALS usually lose about 3% of their lung capacity per month. Using the BiPap helps with this, although it doesn't build lung muscles it makes it easier to breathe. Tell her that it takes a little getting use too, but it will be worth it.
Gordon

[fiddleplayer51]

Hello mndireland,
BiPAP machines used to be big clunky things, but now they're much smaller and the masks are so much better than they used to be. Most people who use them really benefit from them; they sleep better at night and feel better during the day. Hopefully, your mum will surprise you and take to it just fine.
I'll keep my fingers crossed that that's the case!
Jane

[Al]

Hi mndireland. The Bipap is set to one pressure and forces a breath of air in at a set rate per minute. The machine switches to exhale mode which is a lower pressure. Some machines can be set to push a breath after a preset interval if you don't take a breath on your own. Tell your mum to try it in the day to get used to the rythm of it. Trying different masks is a good thing as what feels good for one might not for her. She'll feel better using it. I've been on mine since Jan. 05.
AL.

[leegardens]

Dear Dire,
T
here is a good thread with info about the bi-pap under the CALS discussion group.
Here is the address for the thread:
http://www.alsforums.com/forum/showthread.php?t=5458
I hope this helps. My husband is using bi-pap and it is keeping him stronger.
Lee

[mndireland]

Thank you all so much for the information and advice, it helps a lot. I dont know if she can wait a few weeks for it as the breathing is getting worse by the day. I know she will hate it at first but she is so scared when she does lose her breath that i think she will try anything that may help. Sometimes her breath goes completely and then she takes what i think is a panic attack, they can last for more than 5 minutes sometimes and are really scary, sometimes you can see her lips and face change colour, but once it stops her breathing comes back to normal? Is this too part of it, or do you think that the bipap will help with this also? She is still walking and i think that if she wasnt it might be better as she loses her breath while walking up and down stairs etc, but I cant ask her to go in a wheelchair while she can still walk!! Very confused....

[kcp65]

I was so thankful to come across your post. My dad is in a similar situation. He's still walking fine, despite the muscle atrophy, but what's getting him is the breathing. He's on a Bipap all night and is starting to use it during the day, too. They're (he and his wife/caregiver) are looking into getting a portable unit, since it's getting harder for him to get out and do things.

Part of me wonders if some of the decrease in his breathing capacity the last couple of weeks has to do with the fires out here (California)? The air quality has been bad, and it just seems like my dad's breathing decline has coincided with that.

Hoping the best for all of us.

[leegardens]

Hello kcp65,

The smog was bad here in Atlanta for a few days last week and I saw on the news that there were warnings for people with respiratory problems to stay inside with their windows closed. I believe the smog is worse when the air is hot and humid. I am sure that the fires and smoke in California are definitely affecting your PALS' breathing.
Take care.
Lee

[BethU]

Sometimes her breath goes completely and then she takes what i think is a panic attack, they can last for more than 5 minutes sometimes and are really scary, sometimes you can see her lips and face change colour, but once it stops her breathing comes back to normal? Is this too part of it, or do you think that the bipap will help with this also? ....

Hi ... I don't know if this will help at all, but I have had respiratory failure and hospitalizations twice (before ALS dx), and I had some panic attacks like your mother's where it seemed my lungs were frozen ... couldn't breathe in or out ... and the nurses and therapists told me to take tiny sips of air in (like you're sipping very hot soup from a spoon), and I tried to do what they said, and it seemed to help get my lungs working again. It's an utterly panicky feeling, and I sure feel for her.

I don't know if this works the same in ALS, but it helped me during panic situations. But I'm pretty sure the bipap machine will eliminate those events and keep her breathing steadily.
Good luck to you both,
BethU

[lynster]

Hi... My husband has not been diagnosed yet, but has had severe breathing problems. He got a bipap, and it has helped him tremendously! It took a few visits to get the settings right for him, but now he sleeps well and through the night. It has made a massive difference for him. Hopefully it will help you, too. I know I have a better piece of mind knowing that he is sleeping well.

[kcp65]

Hello kcp65,

The smog was bad here in Atlanta for a few days last week and I saw on the news that there were warnings for people with respiratory problems to stay inside with their windows closed. I believe the smog is worse when the air is hot and humid. I am sure that the fires and smoke in California are definitely affecting your PALS' breathing.
Take care.
Lee

Thank you, Lee, for your response. BTW, my beloved Dad's name is also "Lee"! :-D

Take care of yourself, too.

[mndireland]

Its been weeks since i first wrote this but my mam was just taken in to hospital tonight, i dont know why they take so long!! I will rest tonight and sleep as i know she is in a ward were the nurses know whats happening, we've not been sleeping at all, as she wakes up gasping for breath, and sleeps almost sitting up as lying flat makes it worse. Each night i lay listening to the deep breaths until she falls asleep and then i jump up 3 or 4 times during the night and check on her, feeling guilty that ive not been listening for her. Now i really want this machine that can help, and take away some of the fatigue and breathing problems at the same time. Just cant help feeling last time she went in there i thought she had muscle problems in her hands and it turned out to be als, and this time i think they can fix her breathing but what if they cant?? What if its bad news again?? Really nervous and cant wait for the next few days to be over.

[CindyM]

I am sure she will do much better when she gets her Bi-pap. Meanwhile, give her a hug from all of us while she is in hospital and take time to get some much-needed rest yourself! Cindy

[mndireland]

Spoke to the docs today, her fvc is 40%, this is bad isnt it?? I have read on some previous posts that 60% means about a year to live, does this mean i have only about 8 months, scared so much. Please advise me as best you can....

[Al]

While 40% is not good, lots of people can live a few years on Bipap 24/7. Depends on the person. Don't get yourself in a panic over arbitrary numbers. Just as an aside here coincidentally I am listening to an Irish/Celtic radio station from Dublin on my computer.

AL.