CarolSue
Distinguished member
- Joined
- Dec 16, 2015
- Messages
- 123
- Reason
- PALS
- Diagnosis
- 01/2016
- Country
- US
- State
- Kansas
- City
- Middle America
At my last ALS clinic my FVC was 66. Three months before that it was 70. The RT asked if I was interested in using a Bipap. I told him it was my understanding that it was best to get it before I needed it to be able to get used to it.
He ordered it and it was delivered several weeks later. I started using it at night when I went to bed. It wasn't long, and I was getting frustrated. The machine was going down to "4" on the exhale and up to "12" on inhalation. That was fine but it started going up to near 20. I felt like it was blowing air up into my sinuses! Very uncomfortable.
I tried to keep using it until I woke up one morning with debilitating vertigo. I had no idea what was happening to me, only that I felt like I was being thrashed around and couldn't get out of bed. I was given something for nausea and Ativan and told it wasn't related to ALS at the ER. I temporarily quit using the bipap and in the meantime got the rep to help me reset the machine. It's more comfortable now, the range from exhale to inhale is 4 to 10/12. It hasn't raced up to 20 yet.
Just wondering if anyone else had this experience with the bipap and also at what point did you begin using your bipap?? I really don't feel like I need it yet...but was told it would give my diaphragm "a break" and help me to live longer. I actually feel like I can't breathe as well when I remove it after being on it for 2 or 3 hours. Opinions please??
He ordered it and it was delivered several weeks later. I started using it at night when I went to bed. It wasn't long, and I was getting frustrated. The machine was going down to "4" on the exhale and up to "12" on inhalation. That was fine but it started going up to near 20. I felt like it was blowing air up into my sinuses! Very uncomfortable.
I tried to keep using it until I woke up one morning with debilitating vertigo. I had no idea what was happening to me, only that I felt like I was being thrashed around and couldn't get out of bed. I was given something for nausea and Ativan and told it wasn't related to ALS at the ER. I temporarily quit using the bipap and in the meantime got the rep to help me reset the machine. It's more comfortable now, the range from exhale to inhale is 4 to 10/12. It hasn't raced up to 20 yet.
Just wondering if anyone else had this experience with the bipap and also at what point did you begin using your bipap?? I really don't feel like I need it yet...but was told it would give my diaphragm "a break" and help me to live longer. I actually feel like I can't breathe as well when I remove it after being on it for 2 or 3 hours. Opinions please??