UARS and my treatment plan: need help

[musculus]

Hi, I am a 30 yrs male with UARS (daytime sleepiness and AHI number about 2: very few apneas and hyponeas, a lot of microarousals during stage 3 sleep and REM).

I have somnomed MAS dental appliance, AVEO tsd, and a Respironic BIPAP AUTO. There is no compliance issue whatsoever. I can tolerate all those treatment options with IPAP pressure up to 13cm H2O.

The problem is I cannot get refreshing sleep with those treatments. Sometime I even use dental appliance together with BIPAP to little avail. I use sleepyhead to see the airflow data everyday and there are a lot of flow limitations and irregular breathing throughout the night. Here are the summarized findings:

1. I am very sensitive to airway obstruction. My sleep doctor printed out the first hour of my sleep study, second by second data. Even a small flow limitation can cause EEG fluctuation/microarousal.

2. The tougue and nasal obstructions are not the problem. I have done experiment using Afrin spray(clear up nasal airway effectively) before sleep, wearing AVEO tsd (very effective to lift tongue base) and BIPAP during sleep. The sleep quality is still bad and the flow limitations are still present.

So I conclude the problem is the soft palate and since it cannot be successfully treated with xPAP, I scheduled Uvula Flap surgery May 30th, 2013.

The question I would like to ask people here is, am I making the right analysis and decision? I can upload more data if needed. Thanks in advance!

[chunkyfrog]

Be sure to read about all the side effects of that surgery.
You may hate the results worse than what is happening now.
It is your decision; and we have not seen your uvula.

[musculus]

Be sure to read about all the side effects of that surgery.
You may hate the results worse than what is happening now.
It is your decision; and we have not seen your uvula.

Thanks. It's the last resort considering I have failed all conservative treatments. And the Uvular Flap surgery itself is more conservative than the traditional UPPP. Doctor also have agreed to keep my tonsils since they are not enlarged.

[Somnolence]

First, the premise of this topic might be a bit off. Some of us might be expert patients, but I don't know that any of us could be considered expert practitioners by any standard. The latter are those folks you should be pursuing serious dialogues with. However, conversations with us might help inform your ability to have a more meaningful visit with the real experts.

Would you like to provide us more information? You mentioned you can tolerate an IPAP up to 13, but what is your EPAP setting?

If you'd like to post some pictures from Sleepyhead, I'm sure they'll be reviewed. A glimpse at your flow, flow limitations, leak rates, and pressures might cue someone in on another possibility you haven't thought of yet.

For example, my first impression based on the limited information you've given is somewhat suspicious in nature. I don't know what the difference between your IPAP and EPAP values is, but I wonder if your persistent flow limitations may decrease with higher EPAP. Mine certainly have. I went from have limitations virtually the entire night at an EPAP of ~6 to several occurring primarily during REM. I am curious whether additional pressure may help reduce those too.

[musculus]

IPAP/EPAP: 11/9



IPAP/EPAP: 8/6

First, the premise of this topic might be a bit off. Some of us might be expert patients, but I don't know that any of us could be considered expert practitioners by any standard. The latter are those folks you should be pursuing serious dialogues with. However, conversations with us might help inform your ability to have a more meaningful visit with the real experts.

Would you like to provide us more information? You mentioned you can tolerate an IPAP up to 13, but what is your EPAP setting?

If you'd like to post some pictures from Sleepyhead, I'm sure they'll be reviewed. A glimpse at your flow, flow limitations, leak rates, and pressures might cue someone in on another possibility you haven't thought of yet.

For example, my first impression based on the limited information you've given is somewhat suspicious in nature. I don't know what the difference between your IPAP and EPAP values is, but I wonder if your persistent flow limitations may decrease with higher EPAP. Mine certainly have. I went from have limitations virtually the entire night at an EPAP of ~6 to several occurring primarily during REM. I am curious whether additional pressure may help reduce those too.

[musculus]

EEG data

[McSleepy]

I can only hope that medicine would one day have advanced enough to be able to properly diagnose and treat all sorts of sleep disorders. If they can go in and replace your failing heart, why can't they even figure out what is wrong with your sleep? Adding to my frustration is that my wife recently had a sleep study and the sleep doctor (that is his only specialty!) said everything looks normal, yet my wife is constantly feeling exhausted. We're still waiting (over a month) for the full transcripts from the sleep study.

Anyway, to the topic. I may have been subject to the same issues as the OP - this is such a grey area, one never knows for sure. I will share my thoughts, for what they may be worth.

I think I also have UARS, in addition to OSA. I don't know whether it is the physiology or the adaptation of one's body to the circumstances, but I think RERA (Respiratory Effort Related Arousal), which are not detected as apneas or hypopneas, are not simply defined by how much actual resistance there is in one's airways. It really is a ratio that also involves your body's ability to trigger and sustain an inspiration (inhalation). And that is highly variable as it relates to a cerebral response, which is subject to all sorts of influences. Yes, because our breathing depends so much on our mind, it is so difficult for medicine to figure out whats' wrong with our sleep. Even worse, when your breathing is fine but there is something else affecting your sleep (like in my wife's case).

In other words, your airways might have little obstruction (at least, not impossible to overcome), now that you are on CPAP, but your mind might have retrained itself to "shut off" upon encountering a lower resistance than most other people, i.e., the threshold might have lowered, for some reason. I personally suspect that my threshold has gotten quite a bit lower since I've been on CPAP, as evidenced by my inability to sleep (at all) without it. The question is, what does that all mean to you and what to do to address it.

Well, I'll start with the experience I had a few years ago. I had been for years on a Respironics BiPAP and doing relatively fine. No data on that machine, so I go by subjective factors: I wasn't feeling too sleepy during the day, but I could still sleep 10, 11 hours, if left be. Now I know that I only need 7, 8 hours to be perfectly rested, so it wasn't perfect. Well, after another sleep study 4 years ago, I was given the new Respironics System One Auto. I won't get into why I couldn't get auto mode to work, but after setting it to bi-level mode (just like my old machine), I had an AHI over 35! I had to find what was wrong and quick. First thing that I noticed was that, unlike my old machine, it did not have the ability to drop the pressure under EPAP upon exhalation (a comfort setting). Well, comfort for some, life-saver for others... Either way, I went after the DME to resolve this and they offered a ResMed VPAP Auto 25 bi-level (my current machine).

I wish I had more time to write, but I'll just put down what I have time for. The new machine had one setting that made all the difference: trigger sensitivity. Well, maybe not all the difference (there is cycle sensitivity, rise time, etc., that I also adjusted), but it is very important. What I did was, first, I had a large pressure support (~7 cm H20, considered unusual by my all medical professionals), and I kept that despite all requests to "get used to a more normal level". Second, I raised the trigger sensitivity to the highest value, the cycle sensitivity to the lowest value, rise time to the fastest. I also limited inhalation time to regulate breathing frequency (I'd get over 20 bpm without it). What those settings did was sense my inspiratory effort and bump the pressure to IPAP (which is much higher than EPAP) and thus aid my breathing, overcoming the respiratory resistance in the process. Now, I'm not trying to simulate an ASV device, but I think my breathing needs some help, and this has not only helped but it has not progressed in over 4 years. In fact, I've been backing off some settings to see whether I can relearn the "good ways".

I certainly do not need to open a can of worms, without having the ability to put any time to explain myself, but assessing CPAP treatment options while mostly dealing with pressures is detracting from important aspects of addressing OSA, but mostly UARS. I develop automated test systems and often we have cases where complex pneumatic systems experience insurmountable problems, and using pressures (and the related sensors to measure them) is not enough to analyse the problems. There is a good reason why a quality flow sensor can cost hundreds of times what a pressure sensor costs, but it is dealing with the insanely complex aerodynamics involved that makes it so difficult to manage. Our body has many sensors (billions of neurons) and it can make complex assessment of its needs, so when something goes out of sync, it is very difficult to find what the best way to address it would be. The medial profession has no choice but typecast us into a few categories they (think they) know about, but that's not helping many of us.

In conclusion, although I realize how little detail I've given to explain myself and support my thoughts, I think there are certain characteristics of your CPAP device that could greatly affect your therapy. As opposed to the limited success and major risks of UPPP surgery. I found what worked for me without much help from the medical profession, and most people are left to themselves to figure it out. I hope you can find something that works for you, too.

McSleepy

[Somnolence]

Hm, seems a bit odd. Your flow limitations are listed as 0 in both. Aren't flow limitations considered hallmarks of UARS? Your leak rate seems unacceptably high to me, but I don't know whether that affects the machine's ability to score flow limitations. Assuming that's the case, you may be undermining your data collection efforts.

I had expected to see upticks in leak rate correspond with more erratic breathing waveforms as you approach REM. I don't really see that's the case. This presumes your soft tissues would be most prone to collapsing/relaxing during that time... Further, you may also be more likely to toss/turn during these periods and dislodge your mask's seal.

I can't provide much insight beyond that, unfortunately. If it were my druthers, I'd consider that surgery of this type offers no guaranty of efficacy and also features a risk of developing scar tissue. I'd also want to address all other possible factors before proceeding.

Please bear in mind that none of this is medical advice.

[musculus]

Thanks! Apparently I misused the term, by flow limitation I mean the irregular shape of the breathing waveforms when I zoom in the sleepyhead data.

There is definitely something wrong with my airway since I sleep very well on my stomach. The problem is I cannot keep that position very long, maybe at most one and half hours. I think I can rule out the tongue since even with dental appliance and aveo tsd, the sleep quality is very poor. That's why I want to address the soft palate.

Hm, seems a bit odd. Your flow limitations are listed as 0 in both. Aren't flow limitations considered hallmarks of UARS? Your leak rate seems unacceptably high to me, but I don't know whether that affects the machine's ability to score flow limitations. Assuming that's the case, you may be undermining your data collection efforts.

I had expected to see upticks in leak rate correspond with more erratic breathing waveforms as you approach REM. I don't really see that's the case. This presumes your soft tissues would be most prone to collapsing/relaxing during that time... Further, you may also be more likely to toss/turn during these periods and dislodge your mask's seal.

I can't provide much insight beyond that, unfortunately. If it were my druthers, I'd consider that surgery of this type offers no guaranty of efficacy and also features a risk of developing scar tissue. I'd also want to address all other possible factors before proceeding.

Please bear in mind that none of this is medical advice.

[musculus]

Reading the full transcript of sleep study would help a lot. I find doctors usually won't dig that deep. Otherwise I would have discovered my SDB problem 3 years earlier.

I can only hope that medicine would one day have advanced enough to be able to properly diagnose and treat all sorts of sleep disorders. If they can go in and replace your failing heart, why can't they even figure out what is wrong with your sleep? Adding to my frustration is that my wife recently had a sleep study and the sleep doctor (that is his only specialty!) said everything looks normal, yet my wife is constantly feeling exhausted. We're still waiting (over a month) for the full transcripts from the sleep study.

Anyway, to the topic. I may have been subject to the same issues as the OP - this is such a grey area, one never knows for sure. I will share my thoughts, for what they may be worth.

I think I also have UARS, in addition to OSA. I don't know whether it is the physiology or the adaptation of one's body to the circumstances, but I think RERA (Respiratory Effort Related Arousal), which are not detected as apneas or hypopneas, are not simply defined by how much actual resistance there is in one's airways. It really is a ratio that also involves your body's ability to trigger and sustain an inspiration (inhalation). And that is highly variable as it relates to a cerebral response, which is subject to all sorts of influences. Yes, because our breathing depends so much on our mind, it is so difficult for medicine to figure out whats' wrong with our sleep. Even worse, when your breathing is fine but there is something else affecting your sleep (like in my wife's case).

In other words, your airways might have little obstruction (at least, not impossible to overcome), now that you are on CPAP, but your mind might have retrained itself to "shut off" upon encountering a lower resistance than most other people, i.e., the threshold might have lowered, for some reason. I personally suspect that my threshold has gotten quite a bit lower since I've been on CPAP, as evidenced by my inability to sleep (at all) without it. The question is, what does that all mean to you and what to do to address it.

Well, I'll start with the experience I had a few years ago. I had been for years on a Respironics BiPAP and doing relatively fine. No data on that machine, so I go by subjective factors: I wasn't feeling too sleepy during the day, but I could still sleep 10, 11 hours, if left be. Now I know that I only need 7, 8 hours to be perfectly rested, so it wasn't perfect. Well, after another sleep study 4 years ago, I was given the new Respironics System One Auto. I won't get into why I couldn't get auto mode to work, but after setting it to bi-level mode (just like my old machine), I had an AHI over 35! I had to find what was wrong and quick. First thing that I noticed was that, unlike my old machine, it did not have the ability to drop the pressure under EPAP upon exhalation (a comfort setting). Well, comfort for some, life-saver for others... Either way, I went after the DME to resolve this and they offered a ResMed VPAP Auto 25 bi-level (my current machine).

I wish I had more time to write, but I'll just put down what I have time for. The new machine had one setting that made all the difference: trigger sensitivity. Well, maybe not all the difference (there is cycle sensitivity, rise time, etc., that I also adjusted), but it is very important. What I did was, first, I had a large pressure support (~7 cm H20, considered unusual by my all medical professionals), and I kept that despite all requests to "get used to a more normal level". Second, I raised the trigger sensitivity to the highest value, the cycle sensitivity to the lowest value, rise time to the fastest. I also limited inhalation time to regulate breathing frequency (I'd get over 20 bpm without it). What those settings did was sense my inspiratory effort and bump the pressure to IPAP (which is much higher than EPAP) and thus aid my breathing, overcoming the respiratory resistance in the process. Now, I'm not trying to simulate an ASV device, but I think my breathing needs some help, and this has not only helped but it has not progressed in over 4 years. In fact, I've been backing off some settings to see whether I can relearn the "good ways".

I certainly do not need to open a can of worms, without having the ability to put any time to explain myself, but assessing CPAP treatment options while mostly dealing with pressures is detracting from important aspects of addressing OSA, but mostly UARS. I develop automated test systems and often we have cases where complex pneumatic systems experience insurmountable problems, and using pressures (and the related sensors to measure them) is not enough to analyse the problems. There is a good reason why a quality flow sensor can cost hundreds of times what a pressure sensor costs, but it is dealing with the insanely complex aerodynamics involved that makes it so difficult to manage. Our body has many sensors (billions of neurons) and it can make complex assessment of its needs, so when something goes out of sync, it is very difficult to find what the best way to address it would be. The medial profession has no choice but typecast us into a few categories they (think they) know about, but that's not helping many of us.

In conclusion, although I realize how little detail I've given to explain myself and support my thoughts, I think there are certain characteristics of your CPAP device that could greatly affect your therapy. As opposed to the limited success and major risks of UPPP surgery. I found what worked for me without much help from the medical profession, and most people are left to themselves to figure it out. I hope you can find something that works for you, too.

McSleepy

[Somnolence]

There is definitely something wrong with my airway since I sleep very well on my stomach. The problem is I cannot keep that position very long, maybe at most one and half hours. I think I can rule out the tongue since even with dental appliance and aveo tsd, the sleep quality is very poor. That's why I want to address the soft palate.

Do you fully wake frequently? If so, have you kept some type of log noting the timing of these events? I would not be surprised to hear they coincide with your entrance into REM sleep.

What do you mean that you can't keep the position for long? It becomes so uncomfortable that you wake? Or do you experience more breathing irregularities in this position?

[musculus]

1. No, I don't wake up from sleep.
2. Leak may be a problem. I'll try putting on smaller nasal pillow and chin strap.
3. Sleeping on my stomach is uncomfortable for me so I cannot sleep in that position for full night. In term of breathing, it's a great position. The below graph is the recording of a period of stomach sleeping. The pattern is uniform, no fluctuations in breathing rate and tidal volume, etc.

There is definitely something wrong with my airway since I sleep very well on my stomach. The problem is I cannot keep that position very long, maybe at most one and half hours. I think I can rule out the tongue since even with dental appliance and aveo tsd, the sleep quality is very poor. That's why I want to address the soft palate.

Do you fully wake frequently? If so, have you kept some type of log noting the timing of these events? I would not be surprised to hear they coincide with your entrance into REM sleep.

What do you mean that you can't keep the position for long? It becomes so uncomfortable that you wake? Or do you experience more breathing irregularities in this position?

[musculus]

Very interesting comment really. It's great for you to get a machine with rich features (I think RESMED make better machines). However, I have to stuck with this DS750 (bought on craigslist) since insurance won't cover me for xPAP.

I can only hope that medicine would one day have advanced enough to be able to properly diagnose and treat all sorts of sleep disorders. If they can go in and replace your failing heart, why can't they even figure out what is wrong with your sleep? Adding to my frustration is that my wife recently had a sleep study and the sleep doctor (that is his only specialty!) said everything looks normal, yet my wife is constantly feeling exhausted. We're still waiting (over a month) for the full transcripts from the sleep study.

Anyway, to the topic. I may have been subject to the same issues as the OP - this is such a grey area, one never knows for sure. I will share my thoughts, for what they may be worth.

I think I also have UARS, in addition to OSA. I don't know whether it is the physiology or the adaptation of one's body to the circumstances, but I think RERA (Respiratory Effort Related Arousal), which are not detected as apneas or hypopneas, are not simply defined by how much actual resistance there is in one's airways. It really is a ratio that also involves your body's ability to trigger and sustain an inspiration (inhalation). And that is highly variable as it relates to a cerebral response, which is subject to all sorts of influences. Yes, because our breathing depends so much on our mind, it is so difficult for medicine to figure out whats' wrong with our sleep. Even worse, when your breathing is fine but there is something else affecting your sleep (like in my wife's case).

In other words, your airways might have little obstruction (at least, not impossible to overcome), now that you are on CPAP, but your mind might have retrained itself to "shut off" upon encountering a lower resistance than most other people, i.e., the threshold might have lowered, for some reason. I personally suspect that my threshold has gotten quite a bit lower since I've been on CPAP, as evidenced by my inability to sleep (at all) without it. The question is, what does that all mean to you and what to do to address it.

Well, I'll start with the experience I had a few years ago. I had been for years on a Respironics BiPAP and doing relatively fine. No data on that machine, so I go by subjective factors: I wasn't feeling too sleepy during the day, but I could still sleep 10, 11 hours, if left be. Now I know that I only need 7, 8 hours to be perfectly rested, so it wasn't perfect. Well, after another sleep study 4 years ago, I was given the new Respironics System One Auto. I won't get into why I couldn't get auto mode to work, but after setting it to bi-level mode (just like my old machine), I had an AHI over 35! I had to find what was wrong and quick. First thing that I noticed was that, unlike my old machine, it did not have the ability to drop the pressure under EPAP upon exhalation (a comfort setting). Well, comfort for some, life-saver for others... Either way, I went after the DME to resolve this and they offered a ResMed VPAP Auto 25 bi-level (my current machine).

I wish I had more time to write, but I'll just put down what I have time for. The new machine had one setting that made all the difference: trigger sensitivity. Well, maybe not all the difference (there is cycle sensitivity, rise time, etc., that I also adjusted), but it is very important. What I did was, first, I had a large pressure support (~7 cm H20, considered unusual by my all medical professionals), and I kept that despite all requests to "get used to a more normal level". Second, I raised the trigger sensitivity to the highest value, the cycle sensitivity to the lowest value, rise time to the fastest. I also limited inhalation time to regulate breathing frequency (I'd get over 20 bpm without it). What those settings did was sense my inspiratory effort and bump the pressure to IPAP (which is much higher than EPAP) and thus aid my breathing, overcoming the respiratory resistance in the process. Now, I'm not trying to simulate an ASV device, but I think my breathing needs some help, and this has not only helped but it has not progressed in over 4 years. In fact, I've been backing off some settings to see whether I can relearn the "good ways".

I certainly do not need to open a can of worms, without having the ability to put any time to explain myself, but assessing CPAP treatment options while mostly dealing with pressures is detracting from important aspects of addressing OSA, but mostly UARS. I develop automated test systems and often we have cases where complex pneumatic systems experience insurmountable problems, and using pressures (and the related sensors to measure them) is not enough to analyse the problems. There is a good reason why a quality flow sensor can cost hundreds of times what a pressure sensor costs, but it is dealing with the insanely complex aerodynamics involved that makes it so difficult to manage. Our body has many sensors (billions of neurons) and it can make complex assessment of its needs, so when something goes out of sync, it is very difficult to find what the best way to address it would be. The medial profession has no choice but typecast us into a few categories they (think they) know about, but that's not helping many of us.

In conclusion, although I realize how little detail I've given to explain myself and support my thoughts, I think there are certain characteristics of your CPAP device that could greatly affect your therapy. As opposed to the limited success and major risks of UPPP surgery. I found what worked for me without much help from the medical profession, and most people are left to themselves to figure it out. I hope you can find something that works for you, too.

McSleepy

[Pugsy]

Large leak territory for the 60 series machines seems to be upwards of 80 L/min...so you sort of got close when you bumped 60 L/min but didn't make it any higher on what you have shown so far.
SleepyHead reports make mountains out of mole hills due to the scale involved.
So as far as leaks go...you are under large leak territory and the machine can do a good job of compensating for leaks.

Now if the leaks are waking you up then they are disturbing sleep and that in itself is unwanted but as far as effective therapy...unless you are staying up over 80 L/min for prolonged periods of time leaks aren't a significant issue.

Respironics machines leak reporting is different from ResMed leak reporting and the amount of excess leak that the machine can deal with is also different. So what would be horrible leak for ResMed user may not be so bad for PR S1 user.

The 5/16 leak line..that one block of leak up close to 60 L/min for roughly and hour between 1:30 and 2:30...probably mouth breathing. Looks rather dramatic due to the scale involved but I suspect that it wasn't massive wide open mouth breathing.
Seen some of that type of leak pattern myself.

[musculus]

Thanks, Pugsy. What is the baseline mask leak, ~28?

Large leak territory for the 60 series machines seems to be upwards of 80 L/min...so you sort of got close when you bumped 60 L/min but didn't make it any higher on what you have shown so far.
SleepyHead reports make mountains out of mole hills due to the scale involved.
So as far as leaks go...you are under large leak territory and the machine can do a good job of compensating for leaks.

Now if the leaks are waking you up then they are disturbing sleep and that in itself is unwanted but as far as effective therapy...unless you are staying up over 80 L/min for prolonged periods of time leaks aren't a significant issue.

Respironics machines leak reporting is different from ResMed leak reporting and the amount of excess leak that the machine can deal with is also different. So what would be horrible leak for ResMed user may not be so bad for PR S1 user.

The 5/16 leak line..that one block of leak up close to 60 L/min for roughly and hour between 1:30 and 2:30...probably mouth breathing. Looks rather dramatic due to the scale involved but I suspect that it wasn't massive wide open mouth breathing.
Seen some of that type of leak pattern myself.