01-20-2019, 08:23 PM
Follow-up (with charts) from initial post by my wife
My wife posted on this board initially 9/17/2018. I can't post the link since I'm new, but her username is terriergal and the thread title was "New mild apnea CPAP user"
I followed up on that thread with the data from her machine that I thought people were asking for but didn't see any replies, so I'm creating a new thread and giving other data that seems to be formatted as you'd like. Please ask for any additional data you need; her story is in the initial post, but here is additional information since then:
Based on information on this board and elsewhere, I changed the min pressure from 4 to 10 cmH20, which was higher than what the APAP had been maxing out at before (~9). This did not seem to have a positive impact. In mid-December, I changed it from APAP mode to CPAP mode, with a pressure of 10. Still no real change for her.
My wife says she has two separate issues. First, the actual snoring and apnea issue which if untreated usually has her waking with irritated nasal membranes and a dried out mouth. The APAP machine does seem to help with that. However, her other problem is an elongated soft palate that closes easily. So if she sleeps on her back (which is her preference due to neck issues), it will close and block her exhalations, which also wakes her up. I think this will show up clearly on the daily data from the charts below, especially from Jan 2.
We visited a sleep specialist in last December, and he recommended a different mask (another nasal mask, she doesn't recall the name) which we have yet to receive. After reviewing her previous sleep study and machine data, he also sent in different machine settings, which actually were similar to, but lower pressure than, what I had changed it to already. He also recommended another titration study at his clinic, which we have not yet done. We also found out that they have prescribed a wrist device to track circadian rhythm but we don't have that yet either. (A separate question on that; apparently they set up an appointment for us to come in to get that, but we never heard about it. Since their offices are 60+ miles away, this is not a small thing. While they seem to know what they are doing, I'm concerned that sort of dropping the ball doesn't bode well for future help from them. Thoughts welcome).
Over the time with the machine, my wife stumbled into one particular scenario that seemed to provide the best results for her, but is not reliably reproducible. She's found that if she can get things set so that she has just a bit of leaking out of her mouth (she has a nasal mask), in any sleep position, she is able to get the benefit of the machine stopping snoring, etc. and still allow her to exhale without waking as much. She has been tweaking settings, typically lowering pressure but also changing EPR from level 1 to 3, in an attempt to find the right balance of inflow and leakage. But it is not reliably reproducible, which is frustrating. Nothing stops her palate from closing when she relaxes.
She absolutely hates the machine right now. I understand it's a process to get everything set properly, but it's been over six months. It isn't that she's not used to it, it's that she feels it creates as many problems as it solves. And she hasn't felt anyone she's talked to actually is listening to the two-problem issue I mention above. We've visited another ENT specialist who has suggested a couple of surgical procedures, specifically, a turbinate reduction or a pillar procedure to insert rods into her soft palate. The former would be covered by insurance, the latter would not. And he seemed hesitant to recommend the pillar procedure. Regardless, these are not small things to do and don't seem to address her main concerns.
I'm open to any thoughts, suggestions, etc. you may have. Thanks.
Here is the overall data through 1/5/2019 for her:
Here is a capture from 12/7/2018, which is just before I changed device settings the first time.
Here are two captures from the first week of January, with settings changed as my wife experimented. She was trying to sleep on her back for part of those nights and you can see the impact, I think.
I followed up on that thread with the data from her machine that I thought people were asking for but didn't see any replies, so I'm creating a new thread and giving other data that seems to be formatted as you'd like. Please ask for any additional data you need; her story is in the initial post, but here is additional information since then:
Based on information on this board and elsewhere, I changed the min pressure from 4 to 10 cmH20, which was higher than what the APAP had been maxing out at before (~9). This did not seem to have a positive impact. In mid-December, I changed it from APAP mode to CPAP mode, with a pressure of 10. Still no real change for her.
My wife says she has two separate issues. First, the actual snoring and apnea issue which if untreated usually has her waking with irritated nasal membranes and a dried out mouth. The APAP machine does seem to help with that. However, her other problem is an elongated soft palate that closes easily. So if she sleeps on her back (which is her preference due to neck issues), it will close and block her exhalations, which also wakes her up. I think this will show up clearly on the daily data from the charts below, especially from Jan 2.
We visited a sleep specialist in last December, and he recommended a different mask (another nasal mask, she doesn't recall the name) which we have yet to receive. After reviewing her previous sleep study and machine data, he also sent in different machine settings, which actually were similar to, but lower pressure than, what I had changed it to already. He also recommended another titration study at his clinic, which we have not yet done. We also found out that they have prescribed a wrist device to track circadian rhythm but we don't have that yet either. (A separate question on that; apparently they set up an appointment for us to come in to get that, but we never heard about it. Since their offices are 60+ miles away, this is not a small thing. While they seem to know what they are doing, I'm concerned that sort of dropping the ball doesn't bode well for future help from them. Thoughts welcome).
Over the time with the machine, my wife stumbled into one particular scenario that seemed to provide the best results for her, but is not reliably reproducible. She's found that if she can get things set so that she has just a bit of leaking out of her mouth (she has a nasal mask), in any sleep position, she is able to get the benefit of the machine stopping snoring, etc. and still allow her to exhale without waking as much. She has been tweaking settings, typically lowering pressure but also changing EPR from level 1 to 3, in an attempt to find the right balance of inflow and leakage. But it is not reliably reproducible, which is frustrating. Nothing stops her palate from closing when she relaxes.
She absolutely hates the machine right now. I understand it's a process to get everything set properly, but it's been over six months. It isn't that she's not used to it, it's that she feels it creates as many problems as it solves. And she hasn't felt anyone she's talked to actually is listening to the two-problem issue I mention above. We've visited another ENT specialist who has suggested a couple of surgical procedures, specifically, a turbinate reduction or a pillar procedure to insert rods into her soft palate. The former would be covered by insurance, the latter would not. And he seemed hesitant to recommend the pillar procedure. Regardless, these are not small things to do and don't seem to address her main concerns.
I'm open to any thoughts, suggestions, etc. you may have. Thanks.
Here is the overall data through 1/5/2019 for her:
Here is a capture from 12/7/2018, which is just before I changed device settings the first time.
Here are two captures from the first week of January, with settings changed as my wife experimented. She was trying to sleep on her back for part of those nights and you can see the impact, I think.
