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Looking for some help - almost 5 years and not feeling a lot better - Printable Version

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RE: Looking for some help - almost 5 years and not feeling a lot better - happydreams - 11-05-2020

@sheepless, I was really astonished to see how much movement there was.  Both my sleep studies noted low or zero PLM.  But at home, I seem to move, stretch, elevate my knee, put my arm over my head, and sometimes raise my torso by as much as 45 degrees.  (Elevated torso has happened multiple times in an evening.)  I'd laugh at the video, but then I realize it's me.  Why am I doing that?  Sometimes it's just a change in position from supine to on my side.  Or grabbing the blanket.  How does one control any of that?  

At the moment the plan is to raise EPAP a hair, and PS a little as well.  (PS=3.2 over 8.4-13)  I'll give that a try for three days.  I will try TRIG=Very High as well.


RE: Looking for some help - almost 5 years and not feeling a lot better - happydreams - 11-06-2020

Wow, for some reason, I just don't tolerate Trig=Very High.  After about an hour I woke up feeling nearly breathless.  However, there's not much to see in the FR.  Only thing I see is a blip in FR 7 minutes before along with a simultaneous increase in leak rate from 6 to 14.4.  Video confirms body movement at 00:31 and me getting up to change the machine at 00:38.  Fortunately, I remembered to turn off the machine for a marker.

Returned to sleep with Trig=High.  Upon wake up, felt like it wasn't a good night.  
11 CA, 2 H, 3 OA, 5 UF2 in sleep  4.52 minutes

I'm going to try this again, but with Trig=High all night.  Guess it takes a while for my body to adjust, so I will give it a few more days.  Hoping the CA's come down.

Big picture:
[attachment=27901]

Change point, Trig Very High to Trig High.  
[attachment=27902]

Comments, observations or suggestions desired.


RE: Looking for some help - almost 5 years and not feeling a lot better - Crimson Nape - 11-06-2020

This is probably just me, but I feel that you have done everything that you can do with your particular CPAP model. If you can't upgrade to an ASV, then the only alternative is to find a setting that you feel the most comfortable.


RE: Looking for some help - almost 5 years and not feeling a lot better - happydreams - 11-06-2020

@Crimson Nape, thanks for your honest evaluation.  This is a likely path to take.  Certainly not ruling it out.

Not sure I have given myself sufficient time to settle out.  Seems I have quick reaction (high CA) to relatively small changes.  This may require more time for my body to adjust.  So, for the moment, I will adhere to my current settings for a few days at least, (maybe as long as a week) to see if at least there is a trend.  

My concern is the results will appear random, so it will may take longer to make the judgement.  On my old Respironics, my AHI behaved exactly like it was random - the histogram was close to bell shaped (367 day trial).  Unfortunately the standard deviation was pretty wide, so how I felt from day to day, was literally a crap shoot.  (One year histogram at identical machine settings).  

I will make a judgement on the VAuto in considerably less time!  My judgement is a week will probably be indicative enough.  I've had apnea a very long time, an extra week in evaluation seems worth it.  Thoughts and comments desired.


RE: Looking for some help - almost 5 years and not feeling a lot better - Crimson Nape - 11-06-2020

The problem is your body is not responding in a positive direction with any adjustment that has been attempted. You are still exhibiting a low Tidal Volume, elevated Flow Limitations, and CAs. Headaches are usually caused by oxygen deprivation. A Sleep Tech once told me that things like leg movement is your body's response to get it to start breathing again. Since you are stating that your sleep is very restless, I can only guess that this is your response. I admire your persistence but the only thing that hasn't been tried (I think) is to lower your EPAP to 6 (or lower) and maintain the same PS. I'm pulling at straws here, in hope that maybe you will drop the CAs.

Boy! Aren't I chocked full of all sorts of good news? Big Grin


RE: Looking for some help - almost 5 years and not feeling a lot better - happydreams - 11-06-2020

@Crimson Nape, this is a good discussion.  I'm not surprised by your observation.  The good news is there are still some possibilities to explore, both on this machine or others.  I have a hunch that when a better set of settings are found, restlessness will decrease markedly.  Don't think I'm at steady state for my last change yet.  So I am willing to wait a bit longer.  

After all, when you came up with the magical settings that gave me a great night of sleep, they were not achieved the first night 1.96, but on the second 0.73.  (PS=3.6 over 8.4-12.  Sleep onset was over an hour.)   

So last nights settings and results of 2.02 may yet have some hope for tomorrow.  (PS=3.2 over 8.4-13. Sleep onset less than 10 minutes.)  At least I am hoping so.  Last night I changed PS by 0.2, so that may have increased centrals.

If there are poor results after a couple of days time, I could try a repeat at the magic setting or something around there, possibly at even lower EPAP levels.  If all of that doesn't help, it's time to seriously consider machine change.  For that, I will need more assistance.  I'm just barely grasping the nuances of bilevel, ASV will definately test my abilities.  

Comments, observations by all parties are welcome.  Thanks for everyone's support, it's greatly appreciated.


RE: Looking for some help - almost 5 years and not feeling a lot better - sheepless - 11-06-2020

I'm no expert but in my limited experience your movement doesn't look and sound like plm. I do wonder if your movement and ca are related though. do you know if you sleep this restlessly without cpap? it could be the fight to breathe, anxiety, pain/discomfort, digestion... lots of things. your numbers aren't bad and as Crimsom Nape said, you're running out of things to tweak. you still have ti controls though and you might read up on them starting with the clinical manual. using the machine while awake or dozing, pay attention to your breathing to determine if you feel the machine is or isn't in sync with your inhale & exhale. it's possible you just don't tolerate a v high trigger, it might be wrong for your condition, or you might find timing control adjustments will overcome your breathlessness. if not in sync, adjust trigger, cycle, ti min, ti max as appropriate. experiment while awake with these settings. let comfort be your guide.

here's a brief description from a hartmedical webpage:

TiControl Feature
The TiControl feature on the AirCurve VAuto machine monitors the pattern of inhalation and exhalation, comparing it against the TiMax and TiMin settings on the machine. Those with respiratory disorders such as COPD or obstructive lung disease may experience early or delayed changes from inspiration to expiration, referred to as cycling. The 10 VAuto BiLevel TiControl feature is designed to prevent cycling by setting a minimum and maximum time limit on inspiration. When the machine detects the user breathing which falls outside the machine settings, it will intervene to alter the timing of the delivered IPAP (inhalation) or EPAP (exhalation) pressure.

TiControl Settings:

Ti Max: Maximum length of Inhalation
Ti Min: Minimum length of Inhalation
Trigger: Sensitivity level for inhalation trigger
Cycle: Sensitivity level for exhalation


RE: Looking for some help - almost 5 years and not feeling a lot better - happydreams - 11-06-2020

@sheepless, I'd agree, the movements captured on video don't match PLM.  As far as a cause for restlessness, anything could be up for grabs.  I don't think digestion, or anxiety are top candidates, however.  I'm not anxious about sleep or the process of going to sleep.  By evening, I am tired and want to go to bed.  I just strap everything on and plunk down in bed.  Most nights I'm asleep in 15 minutes or less.  I haven't noticed any increase in digestive issues since getting rid of my extra pillow.  (Now at single pillow.)  Just today I realized my soft collar is 8 months old.  I know they lose support over time.  I just ordered a replacement.

At the moment I'm leaning towards the triggering, cycling and Ti controls.  It seems if not matched to the patient it could cause issues.  Not sure if this is my problem at all.  I do know that there might be some issues with my settings.  I discuss them below.

I have not adjusted Cycle (from medium) and the default setting for Ti_min seems odd.  Ti_min = 0.3 seconds, which seems kind of short, at least compared to most of the table settings in the manual.  (pg6)

My median BPM is about 17.5.  The table suggests Ti_min to be 0.8 sec for BPM=20.  Current settings for Ti_max = 2.4 sec, which again is in excess of 2.0 sec recommended for Ti_max at BPM=10.  My awake BPM is around 8-9.  

Cycle seems (at least from the figure on pg5 of the clinician manual) to control the end of inspiration.  If I understand the figure, to increase inspiratory time, one would reduce the parameter Cycle.  It is totally unclear to me the interplay between Cycle+Trig and Ti_min+Ti_max.  My first two readings of the manual do not reveal an explanation how to prevent interaction or more specifically, how to set all four parameters in an optimal fashion.  It would be very instructive to have a ResMed expert  describe how to go about making those four settings.

Thanks all.  Looking forward to continuing discussion.


RE: Looking for some help - almost 5 years and not feeling a lot better - sheepless - 11-06-2020

"It would be very instructive to have a ResMed expert  describe how to go about making those four settings."

ditto.

as often as I've read the manual, I'm not clear enough on how they work together to explain it. I mostly go by trial & error, oscar reports & how I feel.

I don't know if these settings will address your problems either but it's worth a try.

hopefully someone that can explain it in some detail will come along.


RE: Looking for some help - almost 5 years and not feeling a lot better - Crimson Nape - 11-06-2020

I'm not an expert by any means, but I think I can explain the Ti_min, Ti_max, Trigger, and Cycle.  
  • Ti_min:  This setting is the minimum time that the IPAP pressure will be in effect before allowing it to drop to the EPAP pressure.  In theory, you could set this to 2.0 seconds and if you tried to exhale before the 2 seconds had lapsed, you would be trying to exhale against the IPAP pressure, at least until the 2 seconds had elapsed.

  • Ti_max:  This is the maximum number in seconds that the CPAP will maintain the IPAP pressure.  After it has reached the set time, the CPAP will drop to the EPAP pressure.

  • Trigger:  The trigger is the sensitivity setting to detect inhalation.  The higher the setting the more sensitive to flow changes.  That is one reason that a High or Very setting aids in CA control. Any slight breath change after exhalation will be sensed as an inhale attempt, thus triggering the IPAP pressure.  (The IPAP pressure is almost akin to a non-evasive ventilator.)

  • Cycle:  Another sensitivity setting but this is to sense the drop off of an inhalation cycle.  Reducing the sensitivity will result delay the pressure drop from IPAP to EPAP, extending the breath waveform.  Likewise, increasing the sensitivity will drop the IPAP faster thus truncating the breath waveform.

Easy-Breathe - Central sleep apnea detection - available in all modes.

Please feel free to correct anything that I might have gotten incorrect.

After all this, I hope this was the information you were requesting. Big Grin