Hurting today...changed my settings

[Zandor435]

I have a respironics dreamstation.  I have been reading a lot about people tweaking their machine to improve therapy.  I have been on my CPAP for about a month with steadily improving AHI.  Started around 13 AHI.  I got down to about 5 AHI for a few days, but have been bouncing between 6-10 AHI for the last 10 days or so.

SleepyHead 5/9/2017


My min pressure is 8.5 cm and my max is 20 cm.  i changed it last night to 8.5 and tried to sleep with it fixed on CPAP mode.  That only lasted a few hours.  I had to change it back to Auto.  I changed it to 8.5 cm to 20 cm.  It was a rough night and I am feeling it today.  Last night was the first time since first using the machine that i started to get jittery again.    

I am going to leave it on Auto.  But does anyone have specific suggestions?  I think I am going to slowly change my upper limit down and my lower limit up so that i can hone in on a fixed pressure.  i suspect the changing pressures is what is waking me.

thanks for any help on this.

[Gideon]

Observations:
Most of your CA events occured in the middle session with flex on, Keep your flex off.
On the Auto, you could set your max to 14 and not change your therapy, I'd go for 13 for a start. The min to a 9, not more than .5 changes here.

[quiescence at last]

I agree with flex off.
I suggest CPAP mode versus APAP mode.
I suggest the following:

If APAP, Pick 11cm minimum and 15cm maximum.
If CPAP, Pick 9cm minimum and 13 maximum.

In both cases above the exhale pressure is 9cm min.

Also, please see many posts about a cervical collar which might help.

QAL

[robysue]

I agree with flex off.
I suggest CPAP mode versus APAP mode.
I suggest the following:

If APAP, Pick 11cm minimum and 15cm maximum.
If CPAP, Pick 9cm minimum and 13 maximum.

This makes no sense.  CPAP mode has no "minimum" and "maximum" pressures.

[Zandor435]

Thank you for all the suggestions. I will definitely make sure my c flex is off. I am hoping I can just get back to feeling functional. Anxiety is starting to get into my bones.

Thanks again. I am going to rush out and get a collar as well. I have been thinking about this.

[robysue]

Zandor,

I am sorry to hear that you are not feeling very good yet.

I want to respond to several things you've written, but not necessarily in the order you have written them.

I have been on my CPAP for about a month with steadily improving AHI.  Started around 13 AHI.  I got down to about 5 AHI for a few days, but have been bouncing between 6-10 AHI for the last 10 days or so.

Before changing your pressure settings last night, how much have you been changing the settings? And what were your original settings at?

Also, did anything other than the AHI change about 10 days ago?  New medication? More stress?

And when the AHI started to go up, was the increase triggered by an increase in machine scored CAs or machine scored OAs?

I have a respironics dreamstation.  ...
My min pressure is 8.5 cm and my max is 20 cm.  i changed it last night to 8.5 and tried to sleep with it fixed on CPAP mode.  That only lasted a few hours.  I had to change it back to Auto.  I changed it to 8.5 cm to 20 cm.

Several questions:

1) What pressure setting(s) did the doctor prescribe for you?

2) When your AHIs were in the 5ish range, what was the pressure set to?

3) When you say that you only lasted a few hours on CPAP @8.5 cm, what was the problem or problems? In other words, what made you switch back to APAP 8.5-20?

4) What Flex setting(s) are you using?  The data from May 8 makes it look like you tried CPAP @8.5 with Flex = Off. Then you used APAP with Flex = On, and to my eyes it looks like you probably had Flex set to 2, but I can't tell for sure.  (Flex is different from Resmed's EPR, and its not easy to determine the Flex setting from the SleepyHead EPAP graph.)  The final part of the night looks like you were using APAP with Flex = Off again.  Or maybe Flex =1?  

I have been reading a lot about people tweaking their machine to improve therapy. 
...
i changed it last night to 8.5 and tried to sleep with it fixed on CPAP mode. 
...
I had to change it back to Auto.  I changed it to 8.5 cm to 20 cm. 
...
I am going to leave it on Auto.  But does anyone have specific suggestions?  I think I am going to slowly change my upper limit down and my lower limit up so that i can hone in on a fixed pressure.  i suspect the changing pressures is what is waking me.

Yes, a lot of people around here tweak their machine's settings and many of them are quite successful in improving their therapy in terms of data numbers and, more importantly, in terms of how they feel during the daytime.

But before starting to tweak the pressure settings, you need to have an idea of what you are hoping to accomplish and how tweaking the pressure(s) could achieve what you are trying to do.  Changing multiple variables at the same time is usually not a good idea because then it's hard to figure out which change may be responsible for making things better (if they get better) or, more importantly, which change may be responsible for making things worse when they get worse.

It's also important to realize that it can take a few days for your body to fully acclimate to a new setting. Changing the settings too frequently can also make it difficult to figure out whether something is working or not.  Changing settings twice during one night muddles a lot about what the data for the night might mean.

So the question becomes: In addition to reducing your AHI to below 5, what are you trying to fix?

One hint is given by the fact that you write:

i suspect the changing pressures is what is waking me.

So tell us about how often you are waking up and why you suspect that the changing pressures are the reason you are waking.

It is true that some people do better on CPAP (fixed pressure).  And some people do better on APAP with a very narrow pressure range. And some people do better on a wider range, often because their apnea varies based on sleep position and the amount of REM they get in a given night.  

Likewise, some people do better with Flex turned Off.  Others do best with Flex turn On and set to whichever setting feels most comfortable when they're awake but trying to get to sleep.

In other words, there are no "right" answers in terms of CPAP vs APAP. And there are no "right" answers in terms of Flex.

So let's start from the start:

1) What did you hope to accomplish by using straight CPAP?  A lower AHI? Fewer wakes? Or both? The data you posted indicates that if you want to use straight CPAP, you may need a CPAP pressure of 13 or 14cm (or even a bit more) to properly control the worst of your obstructive events.  I know that because of what happens to your pressure between 6:00 and 8:00.  That large pressure increase is in response to several clusters of OAs and Hs.  Clusters of obstructive events like these are likely to be more common if you are using straight CPAP with a pressure well below your 95% pressure level when using APAP.  So CPAP @ 8.5cm is not likely to control your obstructive stuff enough to keep your AHI below 5.0.

2) What caused you to abandon the straight CPAP @8.5 cm experiment at 2:45, about 3 hours after the beginning of the night?  Did you wake up and just decide something must have been wrong, so you changed the settings?  Or did you wake up in some kind of real discomfort? If so, what was uncomfortable? Was it hard to exhale against the fixed pressure? Or, perhaps, did it feel like not enough air was coming through the mask?

3) How long did it take you to get back to sleep after you changed the settings on your machine? And any chance that you woke up around 3:45 or 4:00? And if you did wake up then, did you have a whole lot of trouble falling back to sleep?  It also looks to me like you were probably awake or at most drifting in and out of sleep for that whole short session that lasts from roughly 4:45 to 5:15. Any chance you were really restless during that period?   The answers to all of these questions are important to teasing out the significance of the CAs that are recorded between 2:15 and 5:15.  If you were doing a lot of tossing and turing between 2:15 and 5:15, those CAs may not actually mean anything. On the other hand, if you have good reason to believe that you were soundly asleep, they *might* mean something.

4) How long did it take you to get back to sleep after you apparently switched from Flex = 2 or 3 to Flex = Off or 1 around 5:30? And what happened right after 8:00? If you were using the SmartRamp feature, I would guess that you woke up enough to hit the ramp button, but you didn't turn the machine off.  Any chance I'm correct?  And did you finally get to soundly asleep after 8:00?

In answer to your question:

I am going to leave it on Auto.  But does anyone have specific suggestions?  I think I am going to slowly change my upper limit down and my lower limit up so that i can hone in on a fixed pressure.

Several suggestions:

Focus on comfort issues FIRST
Comfort while using the machine is critical: If you cannot get comfortable enough to fall asleep with your machine, it's going to be tough to get to sleep. And if you can't actually sleep soundly with your machine, it's hard to feel at your best regardless of how good or bad your data looks.  Comfort related issues you need to sort out are:

• Flex setting. Figure out whether turning Flex off or on is more comfortable for you when you are lying in bed trying to get to sleep.  If you find that you like Flex, then spend some time figuring out whether you like Flex = 1, 2, or 3 best.
  
• Humidity and temperature setting(s). If you are using the heated humidifier and/or a heated tube, take the time to make sure that you are comfortable with your settings.  Some people find they need to turn both the humidity and the temp up as high as possible to be comfortable.  Others find that they do best with very little (or even no)  humidity and/or very little (or even no) added heat.  Nasal congestion can happen when the humidity is either too low or too high.  In general, if you find the air in the mask too warm, too cold, too humid, or too dry, then you need to sort out what humidity/temperature settings are right for your nose.
  
• Mask comfort. I don't know what mask you are using, but your line graph is quite good.  If the mask is genuinely comfortable when you put it on, then you've sorted out the big "which mask to use" question that creates real issues for some newbies.  On the other hand, if you are controlling the leaks only through tightening the headgear to the point where it is uncomfortable, you may need to review the fitting instructions for your mask or consider another mask type.
  

Once you've addressed those basic comfort issues, then it's time to start thinking about the question of what mode to use and what pressure settings to use.

APAP vs. CPAP mode
Unless you can identify why you were uncomfortable enough using CPAP @8.5cm to change back to APAP in the middle of the night, I think that for now, using APAP is probably your best bet.  APAP will allow you to set the minimum pressure lower than the level that is needed to control the worst of your apnea and the pressure should only be super high when there are a lot of obstructive events (OAs, Hs, snoring, flow limitations, RERAs) being recorded.

Pressure Settings
Whether you would be more comfortable using a more narrow pressure range than your current 8.5-15 range is a good question.  But given the clusters of OAs that occurred at pressures above 12 or 13cm on May 8, I'm not sure that you will be able to lower the max pressure setting very much.  Gradually raising your min pressure from 8.5cm may help smooth things out and bring the AHI down: The machine won't have to respond to as many events before the pressure is increased to where it needs to be when the min pressure is closer to the 95% pressure level. A narrower pressure range also means less chance of widely changing pressures waking you up.

If you have no serious comfort problems breathing against 8.5cm when you are awake and trying to get to sleep, it is worth bumping the minimum pressure up a little at a time.  See how setting the min pressure = 9cm feels.  If you have little or no trouble exhaling with the minimum pressure = 9cm for 2-4 days, then bump the minimum pressure up to 9.5 and see how that feels.

The idea is to slowly find the maximum setting for minimum pressure that you are comfortable exhaling against.  After each increase in the minimum pressure leave the settings alone for at least 2-4 days before drawing any conclusions about whether the higher minimum pressure is moving you in the correct direction in terms of bringing the AHI down while not increasing your discomfort while trying to get to sleep.  

Track "How You Feel"
Remember the big picture: The point of CPAP/APAP therapy is not to get perfect numbers.  The point is for you to feel rested when you wake up in the morning and for you to have enough energy to get through your day without feeling fatigued or sleepy.

So use SleepyHead's Notes tab to keep a running log on how you feel. SleepyHead even has a built-in "Zombie" index when you click on the Notes tab in the left side bar of the Daily Detailed Data window.

Once you are consistently feeling rested and even refreshed when you wake up and have enough energy to get through the day, you can declare "victory" and continue using the settings that lead to you feeling good.

[Ockrocket]

While you may need to do some adjustments to your machine to get it all fine tuned to your specific needs..

Also try to not stress overly about the odd run of higher than "normal" AHI numbers, keep an eye on your longer term averages to see that it is not consistently climbing.

I''m normally around the 1.* mark most nights, but have gone in to the high 3.* range on some nights... my 30 day average is sitting steadily at 1.25 though, and I'm happy with that.

However I am playing with my settings in an attempt to overcome the blocked nose issue that has surfaced again now that the weather is heading towards winter, and will be keeping an eye on my monthly average for AHI in case it changes markedly.

[Zandor435]

I feeling slightly better than the last couple of days but I am still feeling jittery. I slept with a cervical collar last night and took two of my lunesta to make sure i got to sleep.  I also took a natural supplement called Somnapure which is basically just a Vitamin mix. 

I turned off the c flex. I woke up a few times w/ the pressure at 13...it seems high for me.  I had to hit the reset button so it would go back to 8.5

Sleepy Head Data link

I appreciate any other suggestions.  Thanks.

[robysue]

I feeling slightly better than the last couple of days but I am still feeling jittery. I slept with a cervical collar last night and took two of my lunesta to make sure i got to sleep.  I also took a natural supplement called Somnapure which is basically just a Vitamin mix. 

Try to not let the SleepyHead data influence your answer to this question: How well did you sleep last night? In terms of getting to sleep reasonably quickly? In terms of staying asleep most of the night? And in terms of comfort when you woke up and were trying to get back to sleep?

I turned off the c flex. I woke up a few times w/ the pressure at 13...it seems high for me.  I had to hit the reset button so it would go back to 8.5

With C-Flex = Off, were you more comfortable, less comfortable, or about the same in terms of being able to exhale against the pressure?  

I know that 13cm feels like a hurricane to you right now, but most of your events last night were OAs. And is some clustering of the OA events that is suggestive of possible REM-related problems.  You may need to either increase the max pressure or the min pressure or both to really prevent those clusters from developing.

Clearly something woke you up around 4:50, when you hit the reset button.  Whether it was the increase in pressure between 4:30 and 4:50 or the cluster of events themselves that triggered the pressure increase is not clear.

I appreciate any other suggestions.  Thanks.

Overall, I think you will need to increase both the min pressure and max pressure settings. Your current range of 8.5-16 is not doing the job with the obstructive events.  I would start with increasing the min pressure first since getting min pressure up closer to the 95% pressure level is usually more effective at preventing clusters of OAs from developing in the first place.  Increasing the max pressure does more to allow the machine to try to break up a cluster once it has started.  But a high max pressure doesn't do much good if the pressure increase wakes you up.

I'm still not sure what you hope to accomplish with the cervical collar set up: Your leaks were not bad before using the collar, so there's no real evidence of mouth breathing that I can see.  If adding the cervical collar to your sleep set up increased your discomfort or your restlessness, you'd be better off not using it.

Likewise, other than eliminating the CAs, I'm not sure what you want to accomplish by turning Flex off.  The number of CAs you were experimenting was a bit troublesome, but it was not screaming, "You must do something NOW".  I say that in part because it's not yet clear how many of those CAs were real and how many were sleep-wake-junk and how many were sleep transitional CAs.  If having Flex turned on is more comfortable to you when you are awake, you might consider turning it back on and not worrying about the CAs for a few weeks.  They could disappear on their own as you start to sleep better and more consistently with the CPAP at a pressure range that eliminates the clusters of obstructive events.

Comfort while using the machine---particularly when you find yourself awake in middle of the night---is a huge part of learning how to sleep well with the machine.

[Zandor435]

I  know it must be time consuming to dig into my data and make specific suggestion as you did.  thank you very much for that. 

I am going on 3-4 days of not good sleep.  when that happens, i find that things start to snowball on me and I get "loopy" and I recognize that I am not thinking as cooly as I would like.  My goal for now is, as you say, to get back into decent enough sleep that I am no longer "loopy" (thinking clearly again) I am making small tweaks and honing in on "perfect" or best possible sleep. 

I will probably take your advice tonight w/ the CA's.  I will turn my C-Flex back on.  Do you know if there is a way with sleepyhead to tell when i turned C-flex off?  I am not sure when i did that.  I am remember most of my other settings for the past 3 weeks.  I am using the previous 3 weeks as a baseline b/c i had moderately good sleep over that time span.

I will also ditch the cervical collar.  I thought it couldn't hurt.  I didn't find it terribly uncomfortable, so I thought I would try it. 

Zandor435 Wrote: I feeling slightly better than the last couple of days but I am still feeling jittery. I slept with a cervical collar last night and took two of my lunesta to make sure i got to sleep.  I also took a natural supplement called Somnapure which is basically just a Vitamin mix.

 Try to not let the SleepyHead data influence your answer to this question: How well did you sleep last night? In terms of getting to sleep reasonably quickly? In terms of staying asleep most of the night? And in terms of comfort when you woke up and were trying to get back to sleep?

Thanks for the levity.  My feeling through the night was better.  (likely b/c i doubled my Lunesta to 2 mg).  I only remember waking up 3-4 times.  But if yesterday was a 4 out 5 on the jitters scale, today is a 3 out of 5 on the jitters scale.  So despite the marginally better night time experience, I still feel "loopy" and jittery today.   There could easily by some confirmation bias happening here.  But i only feel marginally better than yesterday after 7.5 hours

Clearly something woke you up around 4:50, when you hit the reset button.  Whether it was the increase in pressure between 4:30 and 4:50 or the cluster of events themselves that triggered the pressure increase is not clear.

I had the same thought.  I moved from 8 to 8.5 as min pressure on Sunday (maybe Monday).  10 feels uncomfortable as a starting place.  So I understand you correctly.  You are saying that your body will slowly adapt to these higher pressures and then I will get likely prevent some of those OA's?  right?

If that is the case, then the question becomes one of how fast to try and "adapt."  I have seen the suggestions of only upping .5 per week.  Are there any other indicators to use other than my basic comfort for how fast i might be able to "adapt" or up the pressure?

Your summary thoughts area good. I agree.  Again, I can't express how thankful I am to have a community of thoughtful and precise people such as yourself as a support group.  Knowing I can bounce ideas off of this forum helps undermine my anxiety during the "loopy" phases.

thanks so much again.