09-22-2024, 01:46 PM
(This post was last modified: 09-22-2024, 02:00 PM by somniosus.
Edit Reason: added treatment prefix + cervical collar info
)
somniosus - Therapy Thread [new user looking for initial settings advice]
This is really long, so TL;DR:
24 y/o with no major risk factors. I was first diagnosed a few years ago, but treatment was unsuccessful because I wasn't compliant; I'm hoping it will go better this time around. Mild-to-moderate apnea. Events are mostly hypopneas with some central apneas. Looking for advice on what settings I should use to start out. My machine is an AirSense 11 AutoSet.
Background/symptoms: 24 years old, no known risk factors except possibly neck/tongue abnormalities related to a connective tissue disorder. (Hypermobile Ehlers-Danlos Syndrome. There's a bit of data indicating that hEDS might indeed be a risk factor for sleep apnea, probably because of how it can affect our soft tissues, but it's far from conclusive.) Primary symptoms are excessive fatigue/daytime sleepiness, unrefreshing sleep, frequent awakenings. I don't really snore. I grind my teeth quite hard (and wear a mouth guard for this since it was wearing down my teeth), and apparently I talk in my sleep, and more notably I often yell or scream quite loudly. This has grown more frequent and severe over the years. Many/most nights I have nightmares, and the talking/screaming seems to be directly connected to the events of my dreams. I don't think they're night terrors, though I don't know for sure. I live with my parents and they're able to wake me from the screaming without incident, and I can usually recall the dream. I don't sleepwalk or anything like that. (No idea if the screaming stuff is actually related to my apnea, but my doctor seems concerned by it and thinks it's connected.)
Previous diagnosis: I was initially diagnosed a few years ago, in late 2020, after a sleep study. It went very poorly and I slept for maybe two hours total (and not all at once), but I guess it was enough for a diagnosis. Unfortunately I don't have the results from back then and am having some trouble trying to get them, but I do remember that my apnea was considered moderate. I don't recall specifics about the types of events I was having (eg. how many apneas vs hypopneas, what types of apneas, any RERAs or not....).
I attempted treatment for a while (with a Dreamstation) but there were some other life issues I was dealing with, and I utterly failed at being compliant, and had to return it after a few months because I couldn't keep up with the insurance requirements. (And then the Dreamstation was recalled. I don't have any reason to think there were issues with the specific machine I used; I just thought it was a funny coincidence that the recall happened shortly after I stopped treatment.) I sort of put the apnea thing on the back burner; I had a lot of other health problems then (turned out to be mostly related to the hEDS which I was later diagnosed with) and I wasn't super confident in my apnea diagnosis based on the poor quality of the sleep study. (This doesn't necessarily make sense, but it's how I rationalized things at the time.)
Recent results: Fast-forward to now and I'm in a much more stable place, and feel like it's finally time to return to the apnea thing and hopefully address my fatigue issues, which remain substantial. I wanted to 'reconfirm' the diagnosis, since it's been several years. I got an at-home test; I'm aware this is far from ideal, but it's better than nothing. Most of my events were hypopneas, but I did have a fair few apneas too, about 80% of which were marked as 'central/mixed', with only a handful of OAs. My hypopneas didn't usually reach 4% desaturation, so my AHI was mild and my RDI was moderate. Obviously RERAs were not recorded.
OSCAR info from last time: The 'central/mixed' apneas are a bit weird; I don't have any known condition that would cause them. I don't know if they showed up in my initial study or not. When I tried treatment for the first time, I used OSCAR to monitor things, though unfortunately I've since lost the data, and I also didn't really make any changes to settings during my treatment… But I do remember that my AHI was usually in the 20s, with the majority of events being 'clear airway' apneas and hypopneas (about a 50/50 split). This is a bit different from my recent study, which did have some 'central/mixed' apneas, but about three times as many hypopneas. Maybe some of the CAs back then were treatment-induced, but they were present from the very start and didn't get substantially better or worse. It remains to be seen if they will be an issue with treatment this time around; if they do show up again with the same frequency, I'm hoping I'll be able to reduce them by finding the proper settings. (And also by being more compliant/consistent with treatment, which I definitely was not last time.)
I do regret not being more proactive in trying to communicate with the people who managed my treatment. My AHI was bad with the initial settings (which I think were just defaults), and maybe it would've been easier to comply if we'd found something more effective. At one point early on they raised the minimum pressure a bit, but after that we didn't have any further contact, and no other changes were made. I tried to call them only once or twice and never got a response; I should've been more persistent. Or I should've just tweaked the settings myself.
This time after getting my prescription I was able to purchase my own device, so I can adjust the settings as I please.
Seeking advice on initial settings: So with all that being said, I'd appreciate some advice on what settings I should start with, since I didn't have a titration study. (I didn't have one after the initial sleep study either; it was never recommended or even mentioned to me as a possibility.) I have a ResMed AirSense 11 AutoSet. I'm looking for ideas on min/max pressure range, EPR, ramp, that kind of thing. I could just use the machine defaults for all of those, but figured I'd ask first to see if there are any other ideas on better starting values. Presumably things won't be perfect from the start, so I'll follow up as needed with OSCAR data.
The only things I still need to get are an SD card for OSCAR, and a mask. I plan to order those today or tomorrow; I can get started with treatment once they arrive. I know from last time that I hate larger/bulkier masks, and I'm a side sleeper who tends to move around a lot. I anticipate needing to try out several different kinds of masks before finding one that works well, but a nasal cradle/cushion or pillows mask seems ideal, so I'll start with those—maybe I'll get lucky and find a good fit early on.
Edited to add: somehow forgot to include this, then remembered immediately after posting…. My neck is very hypermobile and I have a lot of neck pain/other issues because of it, so when I'm asleep I often wear a soft cervical collar. I just need to get a new one, because the velcro recently stopped working on the one I have. I wasn't wearing it during either of my studies so I'm unsure how it might affect my apnea. It hasn't improved my sleep-related symptoms at all, but maybe it'll help with treatment. Figured I'd mention that since I know it's sometimes recommended.
Thanks for your time, and I apologize for the length. I always want to provide as much relevant information as possible, but I've never been good at doing that in a concise way. So I'll repeat my TL;DR from above:
24 y/o with no major risk factors. I was first diagnosed a few years ago, but treatment was unsuccessful because I wasn't compliant; I'm hoping it will go better this time around. Mild-to-moderate apnea. Events are mostly hypopneas with some central apneas. Looking for advice on what settings I should use to start out. My machine is an AirSense 11 AutoSet.
24 y/o with no major risk factors. I was first diagnosed a few years ago, but treatment was unsuccessful because I wasn't compliant; I'm hoping it will go better this time around. Mild-to-moderate apnea. Events are mostly hypopneas with some central apneas. Looking for advice on what settings I should use to start out. My machine is an AirSense 11 AutoSet.
Background/symptoms: 24 years old, no known risk factors except possibly neck/tongue abnormalities related to a connective tissue disorder. (Hypermobile Ehlers-Danlos Syndrome. There's a bit of data indicating that hEDS might indeed be a risk factor for sleep apnea, probably because of how it can affect our soft tissues, but it's far from conclusive.) Primary symptoms are excessive fatigue/daytime sleepiness, unrefreshing sleep, frequent awakenings. I don't really snore. I grind my teeth quite hard (and wear a mouth guard for this since it was wearing down my teeth), and apparently I talk in my sleep, and more notably I often yell or scream quite loudly. This has grown more frequent and severe over the years. Many/most nights I have nightmares, and the talking/screaming seems to be directly connected to the events of my dreams. I don't think they're night terrors, though I don't know for sure. I live with my parents and they're able to wake me from the screaming without incident, and I can usually recall the dream. I don't sleepwalk or anything like that. (No idea if the screaming stuff is actually related to my apnea, but my doctor seems concerned by it and thinks it's connected.)
Previous diagnosis: I was initially diagnosed a few years ago, in late 2020, after a sleep study. It went very poorly and I slept for maybe two hours total (and not all at once), but I guess it was enough for a diagnosis. Unfortunately I don't have the results from back then and am having some trouble trying to get them, but I do remember that my apnea was considered moderate. I don't recall specifics about the types of events I was having (eg. how many apneas vs hypopneas, what types of apneas, any RERAs or not....).
I attempted treatment for a while (with a Dreamstation) but there were some other life issues I was dealing with, and I utterly failed at being compliant, and had to return it after a few months because I couldn't keep up with the insurance requirements. (And then the Dreamstation was recalled. I don't have any reason to think there were issues with the specific machine I used; I just thought it was a funny coincidence that the recall happened shortly after I stopped treatment.) I sort of put the apnea thing on the back burner; I had a lot of other health problems then (turned out to be mostly related to the hEDS which I was later diagnosed with) and I wasn't super confident in my apnea diagnosis based on the poor quality of the sleep study. (This doesn't necessarily make sense, but it's how I rationalized things at the time.)
Recent results: Fast-forward to now and I'm in a much more stable place, and feel like it's finally time to return to the apnea thing and hopefully address my fatigue issues, which remain substantial. I wanted to 'reconfirm' the diagnosis, since it's been several years. I got an at-home test; I'm aware this is far from ideal, but it's better than nothing. Most of my events were hypopneas, but I did have a fair few apneas too, about 80% of which were marked as 'central/mixed', with only a handful of OAs. My hypopneas didn't usually reach 4% desaturation, so my AHI was mild and my RDI was moderate. Obviously RERAs were not recorded.
OSCAR info from last time: The 'central/mixed' apneas are a bit weird; I don't have any known condition that would cause them. I don't know if they showed up in my initial study or not. When I tried treatment for the first time, I used OSCAR to monitor things, though unfortunately I've since lost the data, and I also didn't really make any changes to settings during my treatment… But I do remember that my AHI was usually in the 20s, with the majority of events being 'clear airway' apneas and hypopneas (about a 50/50 split). This is a bit different from my recent study, which did have some 'central/mixed' apneas, but about three times as many hypopneas. Maybe some of the CAs back then were treatment-induced, but they were present from the very start and didn't get substantially better or worse. It remains to be seen if they will be an issue with treatment this time around; if they do show up again with the same frequency, I'm hoping I'll be able to reduce them by finding the proper settings. (And also by being more compliant/consistent with treatment, which I definitely was not last time.)
I do regret not being more proactive in trying to communicate with the people who managed my treatment. My AHI was bad with the initial settings (which I think were just defaults), and maybe it would've been easier to comply if we'd found something more effective. At one point early on they raised the minimum pressure a bit, but after that we didn't have any further contact, and no other changes were made. I tried to call them only once or twice and never got a response; I should've been more persistent. Or I should've just tweaked the settings myself.
This time after getting my prescription I was able to purchase my own device, so I can adjust the settings as I please.
Seeking advice on initial settings: So with all that being said, I'd appreciate some advice on what settings I should start with, since I didn't have a titration study. (I didn't have one after the initial sleep study either; it was never recommended or even mentioned to me as a possibility.) I have a ResMed AirSense 11 AutoSet. I'm looking for ideas on min/max pressure range, EPR, ramp, that kind of thing. I could just use the machine defaults for all of those, but figured I'd ask first to see if there are any other ideas on better starting values. Presumably things won't be perfect from the start, so I'll follow up as needed with OSCAR data.
The only things I still need to get are an SD card for OSCAR, and a mask. I plan to order those today or tomorrow; I can get started with treatment once they arrive. I know from last time that I hate larger/bulkier masks, and I'm a side sleeper who tends to move around a lot. I anticipate needing to try out several different kinds of masks before finding one that works well, but a nasal cradle/cushion or pillows mask seems ideal, so I'll start with those—maybe I'll get lucky and find a good fit early on.
Edited to add: somehow forgot to include this, then remembered immediately after posting…. My neck is very hypermobile and I have a lot of neck pain/other issues because of it, so when I'm asleep I often wear a soft cervical collar. I just need to get a new one, because the velcro recently stopped working on the one I have. I wasn't wearing it during either of my studies so I'm unsure how it might affect my apnea. It hasn't improved my sleep-related symptoms at all, but maybe it'll help with treatment. Figured I'd mention that since I know it's sometimes recommended.
Thanks for your time, and I apologize for the length. I always want to provide as much relevant information as possible, but I've never been good at doing that in a concise way. So I'll repeat my TL;DR from above:
24 y/o with no major risk factors. I was first diagnosed a few years ago, but treatment was unsuccessful because I wasn't compliant; I'm hoping it will go better this time around. Mild-to-moderate apnea. Events are mostly hypopneas with some central apneas. Looking for advice on what settings I should use to start out. My machine is an AirSense 11 AutoSet.
