Bipap time has come

[kylisa]

My mother has been having some smothering spells at night. We spoke with the ALS clinic nurse and she set up a home vist from a respiratory therapy provider. They came yesterday and left a oxygen finger monitor machine to check her breathing throughout the night. Today, they came back to get the readings. This evening they showed up with three different masks and oxygen. My father says that she is not wanting to cooperate and doesn't thinks she needs it. Can anyone offer moral support with this issue.

 

[hopingforthebest]

bipap

Kylisa,

When my husband first started the bipap it was for bedtime only as he felt also that he was smothering when lying down. It took a few weeks to get use to the bipap. I had also gotten a very mild sedative for him for his pcp, and then I would break in half. It was just enough 1/2 hour before bedtime to calm him.

Now, almost 1 year later, the bipap is his friend! It helps him to breath and he is on it almost 20 hours a day.

Once your Mom feels a relief from using it, she will adjust quickly.


Good luck!

 

[sharonca]

You say they brought oxygen? The bipap does not work with oxygen. I have just been getting used to my bi-pap and the only problem I have is the humidifier can have some dripping. I sleep with a hand towel and that seems to work. After having a lot of trouble sleeping for a month or so now I sleep straight through about 7 or 8 hours. It is so nice. I try to relax as much as I can and then just breathe with it. Pretty soon I am out like a light!

Good luck with it.

Sharonca

 

[JohnMc]

Lisa

I started using a bipap about 2 weeks ago. My FVC is over 70%, so I didn't think I really needed one, but I was surprised to find that it does help me to sleep better.

I also have some problems with the humidifier, the tube starts filling up with condensation and it starts making noise.

The main problem I have is that the mask does not seem to fit well, and I have a big red spot on my nose. I am hoping that this will go away with time.

John

 

[CindyM]

Hey everybody- you can buy a covering for your Bi-Pap tubing. Mine is blue nylon (like a ski jacket) and comes with a long zipper. It is supposed to help with the condensation. You might also want to fiddle with the humidifier settings. If I turn mine up too high it spits water into my nose.

I used to get red marks from my mask, too, until I remembered Quadbliss saying that KY jelly helps form a good seal. Well, it also helps protect your face. Slather it around your mask before putting it against your face.

And tell your Mom to try using the Bi Pap while sitting up watching TV. The TV might distract her and help her prove it to herself that she can get used to the machine. That seems to work for some PALS...Cindy

 

[rose]

I wrote about this over on the general forum, (the thread title is about holiday gift ideas for pals) but the posts in the thread morphed onto this subject, ~ mask fitting, hose dripping water, etc. I added a photo album showing the cover that I made to insulate the hose on my machine. I also went the aromatherapy route (the essential olis are set right by the air intake of the machine. The combination of a nice smell, a mask that fits, and the hose insulated has made a HUGE difference in how well I tolerate it and can sleep at night. :smile:

Here's the link to the photo of the cover for the hose:
https://www.alsforums.com/forum/album.php?albumid=69

 

[anneinma]

My dear husband had oxygen as a back up as he also had COPD. Once he started using the B pap all night every night with his head elevated he could breathe better all day without assistance.

 

[CindyM]

Rose, I like the idea of adding essential oils. Been fighting a huge head cold lately and I wondered if I could put a drop of Eucalyptus oil in the humidifyer.

 

[rose]

Cindy,

Essential oils can't go into the water reservoir, but putting some on a cotton ball, or scrap of fabric, right outside of the air intake for your machine will bring it right in! I am so happy that I discovered this, it makes it a lot more pleasant, and, like you said, with a cold, something like Eucalyptus should help to keep your breathing passages open. Feel better soon! :smile:

 

[Al]

That makes sense to me Rose. I was told to use steam distilled water in mine or tap water that had been boiled for 5 minutes minimum. The reason given was that the Bipap forces the air into your lungs so any crud in the water is going to stick in your lungs. We have enough problems without contaminating our water and our breathing.

AL.

 

[Zouz]

You may want to try a nostrils mask

I started the BiPAP two weeks ago during the night and works great. I barely need it during the day. a couple of days, I used when I experienced shortness of breath or got lightheaded but over all it has me running well during the day. I am not using a mask but a nostril contraption that sits against them using a head gear. I think because i can still breath without using my mouth, the contraption works for me. It is pretty light and I can still open my mouth when I choose to and talk (a little deep, but clear enough). I use a AYR cream available at the drugstore and spread it around my nostril openings before I wear the gear. I put some under my nose and on upper lip which helps eliminate friction/irritation. AYR Works great and smells fine. Not much problem with the hose while turning around on my sides either. I do wake up a little while turning but avoid opening my eyes so this helps not to disrupt my sleep too much. BTW, Since my waist and leg muscles are weak, to help me turn around, I use suction bars that I placed on my headboard (yes it does stick on wood furniture that has a smooth finish). My arms are not as weak as the rest of my body, so I hold on to the bars at night to help me turn around. That works for me. Hope this helps.