09-01-2024, 08:35 PM
Making my own settings
Long post, sorry. Hello, I'm new here. I'm interested in feedback, and in getting better educated on how to manage my own sleep care.
I started with CPAP therapy ten months ago, but not in the "official" way. My sleep had been getting worse for a couple of years, perhaps around the time I turned 60. Breathing while lying on my back (the most comfortable for sleeping) had become very difficult even when I was awake. I tried sleeping only on my sides for quite a while, but my hips would ache and I'd have to get up. For a long time I'd had episodes of waking suddenly with a racing heart while on my back. For at least a year I would wake with a very dry mouth and a headache. My husband told me I was gasping and snorting for air. Basically, lots of classic sleep apnea symptoms.
I did not want to admit that, and I didn't want to try CPAP. My husband has been using it for about ten years, and I was convinced I would never be able to sleep with something strapped to my face. I tried special pillows and a lot of sleep hygiene suggestions with no effect. Then a friend gave us a secondhand Airsense 10 Autoset with the idea my husband could use it as a backup. I decided to give it a spin one night just to rule out CPAP.
So, I strapped on the mask and figured I'd give it ten minutes or so before taking it off. You guessed it, I was out like a light and slept all night. The best sleep I had had in literal years. My AHI that first night was 7.81, but I felt great. I was sold. I had no idea how to change the settings or even if I should, and it was working for me, so I just kept using it as is, other than eventually turning down the ramp time to just 5 minutes. I read the manual, I bought replacement filters and nose pillows and I kept it clean. I downloaded OSCAR and occasionally looked at the data. The settings on the 10 are APAP with a range of 7.8 to 13.
About a month after starting it, I talked to my doctor (December 2023) and asked for a sleep study. They referred me right away, but it took until April 2024. I eventually had an in-lab study which confirmed I had "mild" sleep apnea, but by then I think my AHI had gone down from months of treatment and perhaps less inflammation of the airways. I skipped four nights of therapy before going in to the study to try to re-set somewhat, and my sleep wasn't too bad compared to how it had been before therapy.
So my sleep doctor may have a misleading impression of how bad my underlying condition is. I told him everything I just mentioned about using a unit on my own, but he seemed to wave it off. I went in for a sleep lab titration study a while later. I have all those months of data on an SD card, though I am not very clear on how to interpret most of what I see.
So sleep medicine being what it is, this last week (late August 2024) I finally got an officially prescribed unit. It's an Airsense 11 Autoset. The tech at the DME place set it with a short ramp time as I asked, and he put in the prescribed settings. This turned out to be CPAP at 8.
I stuck it out for three nights. My sleep was trashed. The machine was worse than having nothing. It felt hard to breathe out, and also as if I was not getting enough air on the inhale. I have no idea why it was set like that - it's completely inadequate. It can't have been personalized for me. Is that some kind of default setting for people who are just starting out? If so, I can see why so many of them have trouble adjusting. I'm used to my machine and this was still terrible. It was difficult to fall asleep, I didn't sleep much and I kept waking up and staying awake. I stayed in bed TEN HOURS before I felt like I could drag myself out. I had a headache just like I used to get before I started therapy.
The same thing happened each night. My AHI was low, but that was probably because I wasn't even sleeping. I felt worse every day, and sent a message to the clinic on Saturday, but it's a long holiday weekend and no one will read it until Tuesday.
At my age, I am not interested in spending any more bad nights than necessary. Plus sleep deprivation makes me into a risk-taker. So I looked up how to get into the clinical menu on the 11, and I changed all the settings to correspond with what I was used to on my old 10. Last night I slept much better.
Possibly the doctor will yell at me, since of course they can see I'm monkeying with the settings. I feel well within my rights doing so, however. As long as I'm using the machine, they have no grounds for taking it away. Since the prescription settings were so bad, I figure it's up to me how well it gets adjusted. I'm going to have to study up.
I've now put my SD card into the new machine so I can look at my data in OSCAR. I didn't have it installed on those three nights of bad sleep, unfortunately. All I have is the myAir app. It's giving me a score of 100 for each of them, which is ludicrous. Maybe it's giving me lots of points for staying in bed ten hours.
I started with CPAP therapy ten months ago, but not in the "official" way. My sleep had been getting worse for a couple of years, perhaps around the time I turned 60. Breathing while lying on my back (the most comfortable for sleeping) had become very difficult even when I was awake. I tried sleeping only on my sides for quite a while, but my hips would ache and I'd have to get up. For a long time I'd had episodes of waking suddenly with a racing heart while on my back. For at least a year I would wake with a very dry mouth and a headache. My husband told me I was gasping and snorting for air. Basically, lots of classic sleep apnea symptoms.
I did not want to admit that, and I didn't want to try CPAP. My husband has been using it for about ten years, and I was convinced I would never be able to sleep with something strapped to my face. I tried special pillows and a lot of sleep hygiene suggestions with no effect. Then a friend gave us a secondhand Airsense 10 Autoset with the idea my husband could use it as a backup. I decided to give it a spin one night just to rule out CPAP.
So, I strapped on the mask and figured I'd give it ten minutes or so before taking it off. You guessed it, I was out like a light and slept all night. The best sleep I had had in literal years. My AHI that first night was 7.81, but I felt great. I was sold. I had no idea how to change the settings or even if I should, and it was working for me, so I just kept using it as is, other than eventually turning down the ramp time to just 5 minutes. I read the manual, I bought replacement filters and nose pillows and I kept it clean. I downloaded OSCAR and occasionally looked at the data. The settings on the 10 are APAP with a range of 7.8 to 13.
About a month after starting it, I talked to my doctor (December 2023) and asked for a sleep study. They referred me right away, but it took until April 2024. I eventually had an in-lab study which confirmed I had "mild" sleep apnea, but by then I think my AHI had gone down from months of treatment and perhaps less inflammation of the airways. I skipped four nights of therapy before going in to the study to try to re-set somewhat, and my sleep wasn't too bad compared to how it had been before therapy.
So my sleep doctor may have a misleading impression of how bad my underlying condition is. I told him everything I just mentioned about using a unit on my own, but he seemed to wave it off. I went in for a sleep lab titration study a while later. I have all those months of data on an SD card, though I am not very clear on how to interpret most of what I see.
So sleep medicine being what it is, this last week (late August 2024) I finally got an officially prescribed unit. It's an Airsense 11 Autoset. The tech at the DME place set it with a short ramp time as I asked, and he put in the prescribed settings. This turned out to be CPAP at 8.
I stuck it out for three nights. My sleep was trashed. The machine was worse than having nothing. It felt hard to breathe out, and also as if I was not getting enough air on the inhale. I have no idea why it was set like that - it's completely inadequate. It can't have been personalized for me. Is that some kind of default setting for people who are just starting out? If so, I can see why so many of them have trouble adjusting. I'm used to my machine and this was still terrible. It was difficult to fall asleep, I didn't sleep much and I kept waking up and staying awake. I stayed in bed TEN HOURS before I felt like I could drag myself out. I had a headache just like I used to get before I started therapy.
The same thing happened each night. My AHI was low, but that was probably because I wasn't even sleeping. I felt worse every day, and sent a message to the clinic on Saturday, but it's a long holiday weekend and no one will read it until Tuesday.
At my age, I am not interested in spending any more bad nights than necessary. Plus sleep deprivation makes me into a risk-taker. So I looked up how to get into the clinical menu on the 11, and I changed all the settings to correspond with what I was used to on my old 10. Last night I slept much better.
Possibly the doctor will yell at me, since of course they can see I'm monkeying with the settings. I feel well within my rights doing so, however. As long as I'm using the machine, they have no grounds for taking it away. Since the prescription settings were so bad, I figure it's up to me how well it gets adjusted. I'm going to have to study up.
I've now put my SD card into the new machine so I can look at my data in OSCAR. I didn't have it installed on those three nights of bad sleep, unfortunately. All I have is the myAir app. It's giving me a score of 100 for each of them, which is ludicrous. Maybe it's giving me lots of points for staying in bed ten hours.
