Old 02-29-2016, 07:29 PM #16 (permalink)
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Default Re: "proactive" BiPAP

My wife, Darcey, chased a diagnosis of CIDP for over a year. Breathing was becoming a challenge at night, when laying down. Initial "cannot ignore symptoms" happened in November of 2012. In February of 2014, we were referred to and seeing a specialist at Johns Hopkins in Baltimore, MD. During his eval, he discovered that Darcey had lost over 100 pounds of weight over the previous year and that she was finding it uncomfortable to lay flat on her back to sleep at night... as she would often feel out of breath which would wake her, even as tired [exhausted] as she was. He almost seemed angry as he asked about how she felt during the day. "I fall asleep, often. I can even fall asleep in the middle of a conversation", she said. He said, "You are losing so much weight because you are having problems breathing. CO2 is building up because your lungs are having difficulty doing the proper exchange. So you're working overtime to try to breathe better [enough] at night... and it is like you are running a marathon each night while trying to sleep and rest up. You are not resting and you're burning calories that you need to be holding onto." No sleep study necessary. He immediately ordered a BiPAP.

I use a BiPAP for sleep apnea. I had an extremely difficult time adjusting to it. Today, I can't sleep without it. And even if I could sleep without it, I would not. I was concerned that Darcey would have difficulty adjusting, too. SHE DID NOT. Immediately, she was sleeping better through the night. Immediately, she was no longer falling asleep during the day. Immediately, she stopped losing weight. For her, it was a saving piece of equipment (one of the many she would come to appreciate during her ALS journey).

A month later, she was scheduled for a MRI on her head. She was unable to lay down without her BiPAP. They tried to give her O2... but that just didn't cut it. Ultimately, she had to reschedule and use an MRI that allowed her to be upright during the process.

I hope you're able to get providers correctly in line to provide you with the equipment that will be the most helpful to your every day well-being.

Jim
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Old 03-01-2016, 09:50 AM #17 (permalink)
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Default Re: "proactive" BiPAP

Thank you Nikki& Laurie I value your experiences and appreciate your willingness to share them with all of us. Love ya chally
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Old 03-01-2016, 04:51 PM #18 (permalink)
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Default Re: "proactive" BiPAP

My doctor ordered a sleep study early on even though my F the sea was in the high 80s. It showed that I was not breathing properly at night so the BiPAP was ordered. She says they are finding this more often. I was having no symptoms of headaches or trouble sleeping at that time. I would recommend asking the doctor about a sleep study early. The BiPAP wasn't that hard to get used to, but I still fight with the mask a bit.
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Old 03-21-2016, 02:09 PM #19 (permalink)
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Default Re: "proactive" BiPAP

My neuro has also suggested a bipap - even tho I'm not having symptoms either. I'm less then thrilled with the idea, in part because I can't tolerate anything that makes it harder for me to change position in bed then it already is. What has been your experience with moving around with the mask/hose?

Deb
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Old 03-21-2016, 02:36 PM #20 (permalink)
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Default Re: "proactive" BiPAP

Did my breathing tests and even though "scored" well they're going to get me an AVAP. Next is getting the PEG
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Old 03-21-2016, 03:00 PM #21 (permalink)
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Default Re: "proactive" BiPAP

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Originally Posted by dkcarl62 View Post
What has been your experience with moving around with the mask/hose?

Deb
Moving around in bed is not impaired by the BiPAP. The hose is long enough for any movement and is very lightweight. You can sleep on your side but may have to experiment with different masks to find one that doesn't leak when you are on your side. I don't know about sleeping face down. As for "other" activity in bed, yes, you can!
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Old 03-21-2016, 03:20 PM #22 (permalink)
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Default Re: "proactive" BiPAP

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Originally Posted by Diane H View Post
Moving around in bed is not impaired by the BiPAP. The hose is long enough for any movement and is very lightweight. You can sleep on your side but may have to experiment with different masks to find one that doesn't leak when you are on your side. I don't know about sleeping face down. As for "other" activity in bed, yes, you can!
Wouldn't that be a good reason to "christen" other areas as well... (laundry room, kitchen, etc...)
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Old 03-21-2016, 05:30 PM #23 (permalink)
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Default Re: "proactive" BiPAP

Deb, the Sleepweaver uses a slimmer, different bored hose connected to the mask for the last couple of feet (connects to the more traditional-diameter hose that in turn connects to the machine). That is less weight on your face and thus easier to turn (and the SW is cloth, so that's less weight, too). Larry was claustrophobic so we tried a lot of masks.
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Old 03-22-2016, 10:45 AM #24 (permalink)
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Default Re: "proactive" BiPAP

Deb,

I also baulked at the suggestion of needing BiPAP - "slippery slope" and the like - but honestly, it's great!

I can't move my body in bed but can turn my head, which isn't hindered by mask or hose.

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