Struggling with Bi-PAP for a year
I take care of my mother who has severe OSA and CSA and was diagnosed last year. A couple years prior she had a large stroke which, among other things, resulted in aphasia (difficulty speaking/communicating). On top of that, she also has dystonia (uncontrolled muscle movement in her neck that makes her neck turn to the right when she is anxious, when she lifts her left arm, and often when she is sleeping). This background is relevant because it is making adjusting to Bi-PAP, I think, more challenging.
We quickly found out that nasal pillows wouldn't work because she sleeps with mouth open (chin strap didn't work). We have tried a few FFM- original sleep study recommended Air F10 for Her. This seemed to work (ie, she wore some nights for 8-10 hrs) eventually. We went through many issues (lip getting stuck, noises, etc) but got solutions to those basically. I wish I had taken notes in hindsight. At some point, I was not able to get rid of a "gap" that would form on her right side near her mouth- it would make a noise, wake her, sometimes set off leak alarm. She would take mask off sometimes. The headgear was 5 months old and because I had to make it tighter and tighter as time went on I considered that perhaps it was too worn to do its job.
At this point, my mother would wear mask for 2 hrs then leak alarm would go off or noise would start (probably when pressure got high for deep sleep). Sometimes, I could tighten or reposition mask slightly and it would go away for 2 more hrs. Sometimes, she got fed up and refused to wear it. Many nights I set my alarm for 3 AM to try to put mask back on her. I would check the seal with a flashlight to look for the "gap".
A new DME sent a new tech. to house who actually tried to help us. She tried a Mirage FFM and a Quattro Air. They seemed better for about a week and then the issues would start- leak alarm, noises. The Amara View then seemed to be the answer. Again, we had a couple weeks of 8-10 hrs. of sleep. I noticed the AHI in sleepmapper seemed to be higher but wasn't sure if it was because she was just wearing it at beginning of night. It seemed to be lower if machine recorded only 6AM-10 AM use, for example. Then, noises started. The Amara View was incredibly quiet to start with. The cushion material vs. the F10 seemed to hug her face better. I've changed cushions every month (sometimes sooner). The velcro on the headgear is horrible. The side my mom can remove herself has to be firmly rubbed in order for it to stick. Sometimes I am not sure if she took the velcro off or if the pressure popped it.
I ignore the single noises during the night but sometimes they are so loud it wakes us both up. I notice sometimes her EPAP is at its max of 12, and her IPAP is max of 18 or higher (due to PS) when noise happens but not always.
During the night, her head is often to the right so that side of the velcro is pulled back much more than the left side (about 4 inches more) near her mouth. This is the only way to get a good seal. I tried and re-tried evening out both sides. Doesn't work with any mask we tried. She sleeps with her left hand on the headgear strap (a dystonia reaction) but she is probably also touching the strap to relieve pressure on her neck (from the headgear?) which allows her to easily undo the Velcro.
My mom cannot tell me exactly what is bothering her about it- sometimes she chooses a word from a list during the night but it's hard to tell because, well, its the middle of the night and hard for anyone to think. By the morning, I am not sure she remembers what it was that was "wrong" with the mask- meaning, did she take it off/refuse to put it back on because it's too tight, too noisy, or "annoying". I lecture her about how impt it is and she understands at a general level, if not more.
Sometimes she is wide awake in the middle night and the IPAP is near its max. I imagine it is hard to fall asleep like that so I put the ramp on for her.
Basically, I wanted to toss our story out there for any tidbits of advice. We are headed back to the sleep lab tomorrow night because her dr. recently informed us that AHIs are way too high. In the 20s with Amara view many nights but once in a while they are in teens. F10 was more consistently in low teens but dr. thought all data I showed her on Sleepmapper was high. Plus, dr. realizes that my mother, me and my mother's periodic aide can't continue to get up every couple hrs to deal with the mask.
Any advice is appreciated. Tonight I reminded my mom to not hold her breath that it would make machine blow more air in her face. I am in the process of downloading Sleepyhead which may help some of you help us!
Thank you for reading.