SD Card Zip:
https://www.dropbox.com/s/l3i8nj3n02l3h ... 5.zip?dl=0
I'm having a hard time adjusting to having a mask on sometimes I remove it without even realizing it.
There are nights when I pull an all nighter so I can sleep with the mask all the following night.
I have alot of unknown events but I turn the machine off when I get up for the restroom and such so I dont know why there is a large leak and unknown events. I use pillow mask resmed P10 so could it be im opening my mouth.
Maybe I should buy a chin strap and a oximetery?
I had to pay everything out of pocket because my ahi was not high enough in the study but my ahi at home is some times really low and sometimes really high. It very so much and I don't understand it.
The unknown events are big like several min at a time and if im not breathing during that time that would be my issue and why i feel horrible all the time.
Most days I feel better when I wear the mask. Before the machine I had bad days and worse days. I'm starting to think my case is special and I have complex central sleep apnea. When Some days are better than others is that possible?
Sorry I just started this and I want to get well as soon as possible but this treatment is hard to get started. Please help me understand my data and maybe recommend things to try.
Thank You,
Corey
Need help reading data
3 posts
• Page 1 of 1
Re: Need help reading data
easleycorey,
I downloaded your data from dropbox and I'm looking at it now. More about that later.
You might read through the link about Taming the CPAP-induced Insomnia Monster in my signature. Learning how to fall asleep with the mask on my nose was very, very difficult, and I wound up dealing with a pretty serious insomnia monster. He's usually "under control" now, but it's been a long hard battle, and he still regularly breaks out of his cage. Some people find that using a short course of prescription sleeping medicine will help them get over the hump of learning how to fall asleep with this alien on your face. That's an idea you might want to bring up with your sleep doctor.
As for whether to buy a oximeter, that really depends on what your sleep study actually showed. If you did not have any serious O2 desats on your diagnostic sleep study, then I'm not sure I see the point of adding an oximeter to your nightly equipment---it would be yet another thing you'd have to deal with while trying to get to sleep.
That said, it is true that on the days when your machine scored AHI is at it's greatest, you have a lot of machine scored clear airway apneas (CAs). That does not necessarily mean that they are real central apneas that would be scored on an in-lab PSG.
There are a lot of things that can look like a CA to your Resmed machine that would NOT be scored as a real central apnea on an in-lab PSG. But because they look like a CA to the machine, they get scored as a CA even though they're not a real central apnea.
One common thing that can look like a CA to the machine, but which would not be scored as a CA in the lab is what's called a "sleep transitional CA". When we fall asleep, the control for our breathing is handed off from the voluntary nervous system (which controls wake breathing) to the autonomous nervous system (which controls sleep breathing.) Part of this handoff includes resetting the CO2 trigger for inhalation. And it is not uncommon that while the CO2 trigger is being reset, a "sleep transitional central apnea" occurs----i.e. we miss a breath or two while the CO2 trigger is being reset. The thing is, these are considered perfectly normal and they are NOT scored on a sleep test and they are NOT part of sleep disordered breathing.
Now, if you're sleeping well with the machine, there's may be one or two of these transitional apneas when you first fall asleep and may be another one or two scored after a bathroom break. Over the course of the whole night that very small number of "misscored sleep transitional centrals" isn't enough to really change the overall data enough to worry about.
But---if you are NOT sleeping wellwith the machine, it is possible to have a lot of spontaneous arousals and awakenings (that you don't necessarily remember) that are followed by sleep transitional centrals that would not be scored in the lab. And the excess number of sleep transitional centrals shows up in the PAP data as CAs and they can be pretty numerous in some newbie's data. And the new PAPer wakes up feeling pretty awful the next morning, looks at the data, and blames how they're feeling on the number of CAs, when the real problem is that there were too many spontaneous arousals and awakenings in the first place.
In other words, if you are not sleeping well with the machine, you have to consider whether the sleep is bad for reasons other than less than optimally treated sleep disordered breathing.
And that brings us back to the beginning: There's a lot of evidence of bad sleep in your data and in what you've written that might not be caused by less than optimally treated sleep disordered breathing. And it's important to remember that CPAP/APAP doesn't fix bad sleep unless the only reason the sleep is bad is sleep disordered breathing.
In other words, you may need to start looking for other things that are disrupting your sleep.
Some candidates for what might be disrupting your sleep include:
Sleep disordered breathing during the times you are asleep without the mask OR very long wakes during your time in bed window. Most day's data show at least one 1-2 hour long gap in the data. You've said you do know you're taking your mask off without realizing it. And when you do that, the untreated apnea comes back during those times. Some days show shorter 30-minute breaks. And a few days show a pattern of multiple very short sessions that seem to indicate that you tried to fall asleep, but couldn't. And then it's not clear if you just got out of bed (to pull an allnighter to try to make the next night easier??) or fell asleep.
Leaks. While on many nights the total amount of time spent in Large Leak territory is not all that much, you seem to have a large number of relatively short lived large leaks. And then there's the problem that the largest of your Large Leaks are really very, very large---as in well over 40 L/min. And you have a significant amount of leaking that is less than 24 L/min, but continues for quite a while. There also seems to be some correlation between the nights with the highest median leak rates and (much) higher than normal CAs recorded. That may be evidence that leaks that are well below the 24 L/min are still enough to disturb your sleep.
Fragmented Sleep. On the data that I downloaded from your dropbox link, I noticed that are a fair number of places where you are turning the machine off and then back on a few minutes later. You may not even remember these wakes. There's also a fair amount of "spiky-ness" in the Flow Rate graph, and when you zoom in to look at the breathing pattern, it's not uncommon for big breaths to occur before some of the CAs are scored; that can point to those CAs being normal post-arousal sleep transitional centrals that would not be scored on a sleep test. In other words, the problem may be the arousal rather than the flagged event.
Crazy sleep times and sleep hygiene problems. You've admitted to pulling allnighters in an effort to try to make it easier to fall asleep with the mask the next day. But it usually takes more than one day to recover from an allnighter. (Trust me, I know this. It's one of my own problems with sleep hygiene.) The other thing is that you've got some pretty crazy and highly inconsistent sleep times in your data. On a few days you are in bed by 10 or 11 pm and get up until 7:30 or so. Other days, the CPAP data doesn't start until 5:00AM or later, but you still get up by 8 or 9 am. Some days you get to bed by midnight but you sleep until 10:30 or 11:00. On two days, it appears that you took an afternoon or evening nap with the PAP, but didn't use the machine very much that night. And your crazy sleep times are getting worse: Between April 7 and April 10, your bedtime and wake up times were:
April 7:: 5:15AM - 2:00pm
April 8: Didn't use the machine---did you pull an all nighter? Or did you sleep without the machine?
April 9: 5:56AM - 1:22pm
April 10: 8:16AM - 2:50
Now it's true that some people have to deal with constantly shifting sleep times due to their job. But I'm not sure that's what's going on here. So when do you want to be asleep? And when do you need to wake up on a regular basis?
1) Establish some realistic expectations for what's currently happening. Until you manage to get all your current sleep issues better under control, you are not likely to notice much difference from using the machine.
2) Work on your sleep schedule. It is hard enough to teach yourself how to sleep with a CPAP mask on your face. If you are messing up your sleep schedule, that can make it even harder. So don't try to pull an allnighter in hopes that will make the next night somehow "easier". You can't use that strategy in the long run to establish and maintain long term use of the machine. You know your work schedule and what fits your lifestyle. Try to pick a "sleep window" that works and stick with it. Don't allow yourself to go to bed until you are both SLEEPY enough to be willing to mask up AND it's at or after your established bedtime. But at the same time, make sure you get up at your desired wake up time regardless of how little you might have slept the night before. If getting to sleep with the mask on is the problem, you might want to ask your doctor if it would be ok to take a prescription sleeping medication for a week or two.
3) Work on the rest of your sleep hygiene. Don't do things in bed except for sleep and sex. Turn off the computer and tv and smart phone an hour before you want to go to bed. Don't lie in bed for more than 20-30 minutes without sleeping.
4) Work on fixing the leaks. While some of your leaks do look like mouth breathing, others look like mask movement---i.e. you may be dislodging the mask in your sleep rather than doing huge amounts of mouth breathing. While a chin strap might help with the mouth breathing, it may make you even more uncomfortable. And comfort is important right now: If you are NOT comfortable, you're going to continue taking the mask off in your sleep. To help keep the mask in place, you might want to read the fitting guide again. You may also need a way to clip the P10's split straps to your hair to secure it better. You should be able to find a video or two that shows you how to fit your mask correctly. Since you are using the P10 nasal pillows mask, you might consider switching to a different sized pillow. If the pillows are the wrong size that can make the mask more prone to springing leaks and moving around. You might also try putting some Lansinoh on your nostrils because that sometimes can help seal the nasal pillows a bit. You might also consider switching the P10 out for a Swift FX nasal pillows mask since the Swift FX headgear is adjustable.
5) Work on training yourself to NOT take the mask off. You might find that you need to tape the headgear to your face. The point of the tape is not to secure the mask. The point is to make it a bit more painful to remove the mask in your sleep: If you have to tug on the taped mask, ripping the tape off your skin may make you wake up just enough to realize what you are doing. If you wake up desparate to get the mask off, go ahead and take it off for a few minutes, but get out of bed so that you don't immediately fall back asleep without the mask on.
6) When you wake up in the middle of the night without the mask on, calmly put the mask on and try to get back to sleep. The middle of the night is no time to worry about why you took the mask off. Just fix the problem and allow yourself to go back to sleep.
7) Try to minimize worrying about your sleep issues. Yes, that's hard. But the more you worry about those dang CAs that might not even be real, the harder it is going to be to get to sleep with the mask on your nose and to stay asleep all night long.
If you have a follow-up appointment scheduled with a sleep doc, call his/her office and tell them what's going on. Be sure to bring your data with you at your next appointment. If you don't have a sleep doc, share your data with your PCP or whoever wrote the script for the machine and be prepared to discuss your concerns and ask whether you might need a follow-up with a specialist.
I downloaded your data from dropbox and I'm looking at it now. More about that later.
What do you do when you wake up and the mask is not on your nose?easleycorey wrote: I'm having a hard time adjusting to having a mask on sometimes I remove it without even realizing it.
It's not a good idea to get your sleep all messed up: Pulling all nighter in an effort to sleep better the next night is not going to help in the long run. Moreover, given the data that I see, I don't think this strategy is working.There are nights when I pull an all nighter so I can sleep with the mask all the following night.
You might read through the link about Taming the CPAP-induced Insomnia Monster in my signature. Learning how to fall asleep with the mask on my nose was very, very difficult, and I wound up dealing with a pretty serious insomnia monster. He's usually "under control" now, but it's been a long hard battle, and he still regularly breaks out of his cage. Some people find that using a short course of prescription sleeping medicine will help them get over the hump of learning how to fall asleep with this alien on your face. That's an idea you might want to bring up with your sleep doctor.
The Unknown Apneas are scored during the official Large Leaks. Once your leaks get up around 30 L/min the FOT algorithm that the Resmed uses to distinguish between CAs and OAs pretty much fails---i.e. once the leaks are well into Large Leak territory, your machine looses its ability to figure out what kind of an apnea you are having. If the leaks are large enough your machine can also have trouble following your breathing pattern and it may even fail to detect events.I have alot of unknown events but I turn the machine off when I get up for the restroom and such so I dont know why there is a large leak and unknown events. I use pillow mask resmed P10 so could it be im opening my mouth.
A chin strap may help. Or not.Maybe I should buy a chin strap and a oximetery?
As for whether to buy a oximeter, that really depends on what your sleep study actually showed. If you did not have any serious O2 desats on your diagnostic sleep study, then I'm not sure I see the point of adding an oximeter to your nightly equipment---it would be yet another thing you'd have to deal with while trying to get to sleep.
What was your diagnostic AHI? Was there any mention of central apneas on the diagnostic study? And did you have a titration study done or not? If you had a diagnositic study, did it say anything about central apneas?I had to pay everything out of pocket because my ahi was not high enough in the study but my ahi at home is some times really low and sometimes really high. It very so much and I don't understand it.
The lengths of the Unknown apneas are NOT reliable because they are scored when the machine is having serious trouble tracking your breathing because of the official Large Leaks.The unknown events are big like several min at a time and if im not breathing during that time that would be my issue and why i feel horrible all the time.
We all have some days that are better than others. That does NOT mean that you have complex or central apnea.Most days I feel better when I wear the mask. Before the machine I had bad days and worse days. I'm starting to think my case is special and I have complex central sleep apnea. When Some days are better than others is that possible?
That said, it is true that on the days when your machine scored AHI is at it's greatest, you have a lot of machine scored clear airway apneas (CAs). That does not necessarily mean that they are real central apneas that would be scored on an in-lab PSG.
There are a lot of things that can look like a CA to your Resmed machine that would NOT be scored as a real central apnea on an in-lab PSG. But because they look like a CA to the machine, they get scored as a CA even though they're not a real central apnea.
One common thing that can look like a CA to the machine, but which would not be scored as a CA in the lab is what's called a "sleep transitional CA". When we fall asleep, the control for our breathing is handed off from the voluntary nervous system (which controls wake breathing) to the autonomous nervous system (which controls sleep breathing.) Part of this handoff includes resetting the CO2 trigger for inhalation. And it is not uncommon that while the CO2 trigger is being reset, a "sleep transitional central apnea" occurs----i.e. we miss a breath or two while the CO2 trigger is being reset. The thing is, these are considered perfectly normal and they are NOT scored on a sleep test and they are NOT part of sleep disordered breathing.
Now, if you're sleeping well with the machine, there's may be one or two of these transitional apneas when you first fall asleep and may be another one or two scored after a bathroom break. Over the course of the whole night that very small number of "misscored sleep transitional centrals" isn't enough to really change the overall data enough to worry about.
But---if you are NOT sleeping wellwith the machine, it is possible to have a lot of spontaneous arousals and awakenings (that you don't necessarily remember) that are followed by sleep transitional centrals that would not be scored in the lab. And the excess number of sleep transitional centrals shows up in the PAP data as CAs and they can be pretty numerous in some newbie's data. And the new PAPer wakes up feeling pretty awful the next morning, looks at the data, and blames how they're feeling on the number of CAs, when the real problem is that there were too many spontaneous arousals and awakenings in the first place.
In other words, if you are not sleeping well with the machine, you have to consider whether the sleep is bad for reasons other than less than optimally treated sleep disordered breathing.
And that brings us back to the beginning: There's a lot of evidence of bad sleep in your data and in what you've written that might not be caused by less than optimally treated sleep disordered breathing. And it's important to remember that CPAP/APAP doesn't fix bad sleep unless the only reason the sleep is bad is sleep disordered breathing.
In other words, you may need to start looking for other things that are disrupting your sleep.
Some candidates for what might be disrupting your sleep include:
Sleep disordered breathing during the times you are asleep without the mask OR very long wakes during your time in bed window. Most day's data show at least one 1-2 hour long gap in the data. You've said you do know you're taking your mask off without realizing it. And when you do that, the untreated apnea comes back during those times. Some days show shorter 30-minute breaks. And a few days show a pattern of multiple very short sessions that seem to indicate that you tried to fall asleep, but couldn't. And then it's not clear if you just got out of bed (to pull an allnighter to try to make the next night easier??) or fell asleep.
Leaks. While on many nights the total amount of time spent in Large Leak territory is not all that much, you seem to have a large number of relatively short lived large leaks. And then there's the problem that the largest of your Large Leaks are really very, very large---as in well over 40 L/min. And you have a significant amount of leaking that is less than 24 L/min, but continues for quite a while. There also seems to be some correlation between the nights with the highest median leak rates and (much) higher than normal CAs recorded. That may be evidence that leaks that are well below the 24 L/min are still enough to disturb your sleep.
Fragmented Sleep. On the data that I downloaded from your dropbox link, I noticed that are a fair number of places where you are turning the machine off and then back on a few minutes later. You may not even remember these wakes. There's also a fair amount of "spiky-ness" in the Flow Rate graph, and when you zoom in to look at the breathing pattern, it's not uncommon for big breaths to occur before some of the CAs are scored; that can point to those CAs being normal post-arousal sleep transitional centrals that would not be scored on a sleep test. In other words, the problem may be the arousal rather than the flagged event.
Crazy sleep times and sleep hygiene problems. You've admitted to pulling allnighters in an effort to try to make it easier to fall asleep with the mask the next day. But it usually takes more than one day to recover from an allnighter. (Trust me, I know this. It's one of my own problems with sleep hygiene.) The other thing is that you've got some pretty crazy and highly inconsistent sleep times in your data. On a few days you are in bed by 10 or 11 pm and get up until 7:30 or so. Other days, the CPAP data doesn't start until 5:00AM or later, but you still get up by 8 or 9 am. Some days you get to bed by midnight but you sleep until 10:30 or 11:00. On two days, it appears that you took an afternoon or evening nap with the PAP, but didn't use the machine very much that night. And your crazy sleep times are getting worse: Between April 7 and April 10, your bedtime and wake up times were:
April 7:: 5:15AM - 2:00pm
April 8: Didn't use the machine---did you pull an all nighter? Or did you sleep without the machine?
April 9: 5:56AM - 1:22pm
April 10: 8:16AM - 2:50
Now it's true that some people have to deal with constantly shifting sleep times due to their job. But I'm not sure that's what's going on here. So when do you want to be asleep? And when do you need to wake up on a regular basis?
Here are my recommendations:Sorry I just started this and I want to get well as soon as possible but this treatment is hard to get started. Please help me understand my data and maybe recommend things to try.
1) Establish some realistic expectations for what's currently happening. Until you manage to get all your current sleep issues better under control, you are not likely to notice much difference from using the machine.
2) Work on your sleep schedule. It is hard enough to teach yourself how to sleep with a CPAP mask on your face. If you are messing up your sleep schedule, that can make it even harder. So don't try to pull an allnighter in hopes that will make the next night somehow "easier". You can't use that strategy in the long run to establish and maintain long term use of the machine. You know your work schedule and what fits your lifestyle. Try to pick a "sleep window" that works and stick with it. Don't allow yourself to go to bed until you are both SLEEPY enough to be willing to mask up AND it's at or after your established bedtime. But at the same time, make sure you get up at your desired wake up time regardless of how little you might have slept the night before. If getting to sleep with the mask on is the problem, you might want to ask your doctor if it would be ok to take a prescription sleeping medication for a week or two.
3) Work on the rest of your sleep hygiene. Don't do things in bed except for sleep and sex. Turn off the computer and tv and smart phone an hour before you want to go to bed. Don't lie in bed for more than 20-30 minutes without sleeping.
4) Work on fixing the leaks. While some of your leaks do look like mouth breathing, others look like mask movement---i.e. you may be dislodging the mask in your sleep rather than doing huge amounts of mouth breathing. While a chin strap might help with the mouth breathing, it may make you even more uncomfortable. And comfort is important right now: If you are NOT comfortable, you're going to continue taking the mask off in your sleep. To help keep the mask in place, you might want to read the fitting guide again. You may also need a way to clip the P10's split straps to your hair to secure it better. You should be able to find a video or two that shows you how to fit your mask correctly. Since you are using the P10 nasal pillows mask, you might consider switching to a different sized pillow. If the pillows are the wrong size that can make the mask more prone to springing leaks and moving around. You might also try putting some Lansinoh on your nostrils because that sometimes can help seal the nasal pillows a bit. You might also consider switching the P10 out for a Swift FX nasal pillows mask since the Swift FX headgear is adjustable.
5) Work on training yourself to NOT take the mask off. You might find that you need to tape the headgear to your face. The point of the tape is not to secure the mask. The point is to make it a bit more painful to remove the mask in your sleep: If you have to tug on the taped mask, ripping the tape off your skin may make you wake up just enough to realize what you are doing. If you wake up desparate to get the mask off, go ahead and take it off for a few minutes, but get out of bed so that you don't immediately fall back asleep without the mask on.
6) When you wake up in the middle of the night without the mask on, calmly put the mask on and try to get back to sleep. The middle of the night is no time to worry about why you took the mask off. Just fix the problem and allow yourself to go back to sleep.
7) Try to minimize worrying about your sleep issues. Yes, that's hard. But the more you worry about those dang CAs that might not even be real, the harder it is going to be to get to sleep with the mask on your nose and to stay asleep all night long.
If you have a follow-up appointment scheduled with a sleep doc, call his/her office and tell them what's going on. Be sure to bring your data with you at your next appointment. If you don't have a sleep doc, share your data with your PCP or whoever wrote the script for the machine and be prepared to discuss your concerns and ask whether you might need a follow-up with a specialist.
_________________
| Machine: DreamStation BiPAP® Auto Machine |
| Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
Re: Need help reading data
A common cause of arousal (if not conscious awakening) is 'silent' GERD, acid reflux that jolts your system but you're unaware of it except for feeling like crap and maybe waking up with heartburn. A good idea is to stay away from caffeine after noon or at least 3 pm (but don't pile it on prior to that!), and no alcohol for a few hrs before bed.
3 posts
• Page 1 of 1