Therapy using Lumis 150 ST

[StuartC]

Do you have any other CO2 data besides this one?

No.  Wish I did.

[Rubicon]

Can't see any clear-cut correlative Heart Rate Variability (HRV) with the oscillations.

IMO you gotta call your guy up and ask

"Why is my CO2 elevated during sleep?"

If the result is a non-committal "Well, we often see elevated CO2 during sleep..."

Smack him upside the head cause people who respond with "we" think it adds some credibility to an upcoming stupid response.

Then say

"OK but that should only have gone up to ~45 mmHg and mine was higher than that.  Plus you've decided to treat it so how could it be normal?"

Then he's gonna say

"Well er ah err..."

So you say

"Could this be a compensated metabolic alkalosis instead?"

Then hopefully he should say

"Hmm.  Maybe we should check your electrolytes."

So you say

"Damn!  I wish I thought of that!"

[StuartC]

Oh no, you have it all wrong.  "My guy" was known to say:

• "Your AHI is less than 5, there is nothing wrong" (repeat, repeat, repeat)
  
• "Your oximeter might not be accurate. It's not calibrated, you know" (this to an engineer who knows about accuracy, repeatability and resolution, the least important of which is accuracy)
  
• Several strange things that, I suspect, were read from someone else's sleep study.  Phone consultation so I have no idea what he was actually looking at, but they do not appear on my report.
  
• "You do not need a BiPAP." before I got a copy of that report, which had his name and signature on it recommending a BiPAP
  
• "If you want to trial a BiPAP, you can persuade the CPAP supplier to let you try one" and "No, you do not need a script for that."
  
• Nothing, when both the CPAP supplier asked on my behalf for a script to enable me to buy the machine recommended in the sleep study report.
  
• Still nothing when I followed up. Twice.
  
• "Those machines are really expensive", or something like that, relayed to me by the office manager who finally got the script from him (or did she just said that on her own to try justify the situation?).  Any guesses how cross he would be if I sought medical advice from a financial consultant?
  
• And did I mention that the CPAP supplier could not make head or tail of the script because it was, apparently, a mix of settings for an ASV and a VPAP.
  

So, let me tell you, he is going to say nothing more to me because he is no longer "my guy".  I need a new one.

As for metabolic alkaosis, I would hope that has been checked by the rheumatologist who has just said "you need not come back" because they have found nothing to diagnose but have a statistical favourite guess of myocitis.  Not to mention the meatbolic specialist who referred me to the rheumatologist after she added me to a medical trial where they did full genomic sequencing, including Mitochondrial, to confirm that I had a metabolic myopathy, only for the results to come back negative.  Or the specialist physician (now retired), who referred me to the metabolic specialist, who would have loved to do a muscle biopsy for "academic interest" even though the chances of a diagnosis were low (after all, myocitis did not come up in any of the conversations I had with him).  There has also been a cardiologist whose only comment was "you are very unfit, you know" because my right thigh gets so fatigued that I could not continue to it to walk up the sloped treadmill during a cardiac stress test.  And the neurologist who did an EMG, only to tell me that I have some neuropathy in my little fingers, which feel fine to me, but did not detect anything to explain why my thigh fatigues or my little toes are numb (no, every time I ask or they test, I am told that I do not have diabetes).  The same neurologist had previously suggested rheumatoid arthritis even though the blood test had just come back negative.  Then there is the ENT who was somewhat upset when I told him he had not cured my headache (you know, that ONE that I have had continuously since 1998) after he did a sinus operation, which did not surprise me because I had it before he did the op, or even the polyps op that he did before that.  And there is even more that I am either forgetting or just not telling because it is too much.

Sorry, it's good to get that out my system occasionally.

I have a piece of paper on my desk listing on which I did some counting.  13 specialists, 4 or 5 CT scans, 6 MRIs (including one they did on the wrong machine by mistake), 1 PET scan, 3 lung function tests, 1 cardiac stress test and 5 sleep studies.  I've no idea how many blood tests, but it has to be a number 3 digits long.

About this "new guy".  Thanks to your input, I am looking for someone who can check my diaphragm or, if that comes back with no result, consider other restrictive lung diseases since that is what I understand the settings and effectiveness of the BiPAP to suggest.  I have the name of a pulmonary specialist (number 3) in mind and was told yesterday that she is good. Here's hoping.  Maybe she will even test my electrolytes without me asking!

Of course, she is contracted to a different sleep lab, so I am half expecting to be sent for another sleep study (number 6) with who-knows-what as the outcome.  And how long will al of this take?  It has been a long 13 years, what's another one? 

So, you really have no idea how much i appreciate the help that I have received here on this forum.  Or the first day of being an alive human, with some actual energy, that I had today.  Thank you all.

[Rubicon]

Oh no, you have it all wrong.  "My guy" was known to say:

• "Your AHI is less than 5, there is nothing wrong" (repeat, repeat, repeat)
  
• "Your oximeter might not be accurate. It's not calibrated, you know" (this to an engineer who knows about accuracy, repeatability and resolution, the least important of which is accuracy)
  
• Several strange things that, I suspect, were read from someone else's sleep study.  Phone consultation so I have no idea what he was actually looking at, but they do not appear on my report.
  
• "You do not need a BiPAP." before I got a copy of that report, which had his name and signature on it recommending a BiPAP
  
• "If you want to trial a BiPAP, you can persuade the CPAP supplier to let you try one" and "No, you do not need a script for that."
  
• Nothing, when both the CPAP supplier asked on my behalf for a script to enable me to buy the machine recommended in the sleep study report.
  
• Still nothing when I followed up. Twice.
  
• "Those machines are really expensive", or something like that, relayed to me by the office manager who finally got the script from him (or did she just said that on her own to try justify the situation?).  Any guesses how cross he would be if I sought medical advice from a financial consultant?
  
• And did I mention that the CPAP supplier could not make head or tail of the script because it was, apparently, a mix of settings for an ASV and a VPAP.
  

So, let me tell you, he is going to say nothing more to me because he is no longer "my guy".  I need a new one.

As for metabolic alkaosis, I would hope that has been checked by the rheumatologist who has just said "you need not come back" because they have found nothing to diagnose but have a statistical favourite guess of myocitis.  Not to mention the meatbolic specialist who referred me to the rheumatologist after she added me to a medical trial where they did full genomic sequencing, including Mitochondrial, to confirm that I had a metabolic myopathy, only for the results to come back negative.  Or the specialist physician (now retired), who referred me to the metabolic specialist, who would have loved to do a muscle biopsy for "academic interest" even though the chances of a diagnosis were low (after all, myocitis did not come up in any of the conversations I had with him).  There has also been a cardiologist whose only comment was "you are very unfit, you know" because my right thigh gets so fatigued that I could not continue to it to walk up the sloped treadmill during a cardiac stress test.  And the neurologist who did an EMG, only to tell me that I have some neuropathy in my little fingers, which feel fine to me, but did not detect anything to explain why my thigh fatigues or my little toes are numb (no, every time I ask or they test, I am told that I do not have diabetes).  The same neurologist had previously suggested rheumatoid arthritis even though the blood test had just come back negative.  Then there is the ENT who was somewhat upset when I told him he had not cured my headache (you know, that ONE that I have had continuously since 1998) after he did a sinus operation, which did not surprise me because I had it before he did the op, or even the polyps op that he did before that.  And there is even more that I am either forgetting or just not telling because it is too much.

Sorry, it's good to get that out my system occasionally.

I have a piece of paper on my desk listing on which I did some counting.  13 specialists, 4 or 5 CT scans, 6 MRIs (including one they did on the wrong machine by mistake), 1 PET scan, 3 lung function tests, 1 cardiac stress test and 5 sleep studies.  I've no idea how many blood tests, but it has to be a number 3 digits long.

About this "new guy".  Thanks to your input, I am looking for someone who can check my diaphragm or, if that comes back with no result, consider other restrictive lung diseases since that is what I understand the settings and effectiveness of the BiPAP to suggest.  I have the name of a pulmonary specialist (number 3) in mind and was told yesterday that she is good. Here's hoping.  Maybe she will even test my electrolytes without me asking!

Of course, she is contracted to a different sleep lab, so I am half expecting to be sent for another sleep study (number 6) with who-knows-what as the outcome.  And how long will al of this take?  It has been a long 13 years, what's another one? 

So, you really have no idea how much i appreciate the help that I have received here on this forum.  Or the first day of being an alive human, with some actual energy,  that I had today.  Thank you all.

My foot hurts.

A little.

Well, actually not so much.

OK not really.

[StuartC]

I'd tell you to go to bed and have a good night's sleep, except that you're in the wrong time zone. So I will have to do that instead.

[Rubicon]

See you in the AM.

Or PM.

Or whenever.

[StuartC]

Not such a good night.

The only change that I made was set Va = 4.5 L/min to set MV to 6.0 L/min.  Vt became 466 ml and Vt/kg was 6.7 ml/kg IBW.

Here is what I am seeing:

• RR was controlled most of the night.  The trigger events are not clear to me.  It does seem that when pressure went up, tidal volume went up quite significantly and RR went everywhere.
  
• Pressure rose on several occasions and went right up to IPAP max, but spent most of the night below 12.8. 
  
• The first dip in SpO2 was probably REM, starting at about 2:15.  But REM was quite likely only about 25 minutes and yet the SpO2 stayed a little low for much longer.  Looking at flow rates, I suspect that my second REM could have been at about 3:15 (a little early, but that happens) and the third at about 5:15 (right on time).
  
• Pulse rate looks quite different to yesterday.  I haven't been posting those or concerning myself too much with PR, but the difference is quite notable. 
  

I have created charts for last night and the night before just to show some extra information - mainly to show PR and time at pressure, but I left Insp. and Exp. times on there as well.  The Insp. Time charts look quite different to each other too.

Oh, the critical measure?  I have been yawning since I woke, headache is quite intrusive, and I don't feel like I have a rocket up my jack.  

Updated file are in the DropBox

[Geer1]

There is a noticeable difference in those charts but nothing really indicates it being obviously breathing related. RR 13 both nights, TV 480 vs 500, MV 6.25 vs 6.38, average SPO2 the same, min SPO2 pretty close to the same. Even your "low" SPO2 period wasn't significantly worse. To me the variation seems to be largely a night to night variation. I also would warn against comparing against yesterday since you previously said that was a one off amazing night.

If you look closely will notice that most of that time where your SPO2 was on lower side and your heart rate was fluctuating the most your MV was actually above target.

PS going up forcing TV up and driving RR down/everywhere makes some sense as the periods of high PS and ventilation induce inconsistent slow/paused breathing. At this ventilation your RR seems to want to be below 13, RR 12 might be a better target.

[StuartC]

It is certainly a conundrum.  I agree that it is just another night and that no single issue stands out.  But maybe that is the point - to split the night into periods and try make sense of what the controller is doing each time.  For example, why did the pressure not increase when SpO2 had the big drop at the beginning of what I think was the first REM episode?  After all, I want the controller to react during REM.

Technically MV was above target most of the night since the median value was 6.25 and the target was 6.0 - though I do get your point that it was further above target during the period where SpO2 remained low after that initial dip. Why? because tidal volumes were high, perhaps. Why? Well maybe that implies that I was trying to breath slower but more deeply. Why? Don't know.

The reason I make the technical point about MV being above target is that this might be occurring due to PS min alone with little additional input from the controller - and the controller can possibly do nothing to make MV go down.  Also the the difference between MV achieved and target was a little greater last night than the night before.  Might PS min be too high?  You did point out that I maintained oxygen well in S mode with PS of only 5, not 6. 

While I agree that my RR seems to want to be below 13, I don't think it would help to change RR to 12.  That's because my RR really seems to want to be below 12 too.  I that short period just after 3 am, for example, it hovers around 9 to 10.  It is definitely a point to ponder.

Another night at the same settings might be appropriate.  Small twist though - I washed my mask and straps and they have not dried yet.  Either I get the hair dryer out (good idea or bad?) or I use the Vitera, which is just another variable that may have caused the differences in the two periods of sleep on Saturday.

[StuartC]

What am I looking at in the attached chart with respect to the shape of the flow wave?  At no time in this time period is Ti > Ti max, so it is not that.  But backup rate control is just about to kick in from where the green line is. 

The clinical manual for the Lumis says "During sustained apnoea, the iBR will adopt a pre-configured Target Patient Rate."  So, could the machine be interpreting the shape of the flow curve as a limit / apnea?  If so, is there anything that I can do about it?

BTW, this is right at the beginning of the night, just as I appear to transition into sleep, I think.