- Status
- Joined
- Nov 5, 2009
- Messages
- 14,259
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- WA
- City
- Seattle
Hi, Ed.
What kind of mask are you using? There are many more to choose from than what the RT may have shown you. Some people find a nose-only mask less stifling whereas others like the air flow of a full face mask. There is also one that goes around the perimeter of the face, etc. We settled on the Circadiance nasal mask in the later ALS years, but used many others over the pre-ALS (OSA) years.
The BiPAP is a scary contraption, no doubt, but give it time and the right care & feeding, and it can be a good partner. Let me know if you want help with the settings. If you are waking up with it, you may not have the right adjustments to go into deep sleep. My husband was claustrophobic (e.g. used to get sedated before CTs/MRIs) so I have an idea of how daunting it can seem.
Best,
Laurie
What kind of mask are you using? There are many more to choose from than what the RT may have shown you. Some people find a nose-only mask less stifling whereas others like the air flow of a full face mask. There is also one that goes around the perimeter of the face, etc. We settled on the Circadiance nasal mask in the later ALS years, but used many others over the pre-ALS (OSA) years.
The BiPAP is a scary contraption, no doubt, but give it time and the right care & feeding, and it can be a good partner. Let me know if you want help with the settings. If you are waking up with it, you may not have the right adjustments to go into deep sleep. My husband was claustrophobic (e.g. used to get sedated before CTs/MRIs) so I have an idea of how daunting it can seem.
Best,
Laurie
timag49
New member
- Joined
- Nov 23, 2013
- Messages
- 8
- Reason
- PALS
- Diagnosis
- 08/2012
- Country
- US
- State
- CO
- City
- Denver
I also have the trilogy machine. My FVC is right around 50%. For me the key to the machine has been that I am able to sleep most of the night now and I have less anxiety lying in bed. I do not have the use of my arms and legs so all I can do is lie on my back. In addition to my sleep it also means that my wife gets to sleep most of the night which is a big plus. There is a study that I read in the past two weeks a study that describes the advantages of using a noninvasive breathing machine. The basis for participation was 50%. Results- For those who used it greater than four hours a day they had a life expectancy of 14 months, for those who used it less than four hours a day the life expectancy was seven months and for those who didn't use a machine the life expectancy was less than four months. I think this report can be easily googled. I am also a person who has directīves not to get a feeding tube or invasive ventilation. That being said, my quality of life has been improved over the last month and a half since I received the Trilogy. All the best
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