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rested gal wrote:

rooster wrote:The sleep P.A. just called. ---

Here is just a part of what he said.
---
- He said my leak rate of 29 is too high and I might be losing pressure out my mouth. I told him that I was using a FF mask and that the mask manufacturer's specs call for a port flow that is in that range. He said 29 liters/minute is considerably high

I don't think a leak rate of 29 is high at all with a Respironics machine. It's nice and low, imho.

I agree and he is using a Hybrid, leak should be about 50L/m with that mask.

Snoredog wrote:

rooster wrote:Hit-and-run guests. Gotta love 'em.

They had to run, the alarm was sounding on the french fryer

BTW, after I get up, I have been letting the machine sit for about an hour before it will display the previous night's data in the screen. Is there a way to immediately refresh this data when I get up?

Third night with A-Flex machine completed. Here is recap of data:

Night 1 - 9/12
Pressure 4 - 10
A-Flex setting 2
Leak 30
90% pressure 10
AHI 25

Night 2 - 9/13
Pressure 7 - 12
A-Flex setting 2
Leak 37
90% pressure 11
AHI 32

Night 3 - 9/14
Pressure 10
Straight cpap setting
Leak 35
AHI 33

Last night I set the machine at 10 pressure/straight cpap/no flex, because that is what I had been running the last 20 months with my non-data-capable cpap. That AHI data seems suspect, but it would explain why I have continuously felt so bad the last 20 months. I am beginning to think this therapy has been doing nothing for me.

I am going to try to see a different sleep doc late next week nearer to my home. I stopped by a couple weeks back and signed the forms for them to get my records from my current sleep doc - hopefully they have them. I will get the card read.

What settings should I experiment with in the meantime?

Den, I'd be curious to know if you had centrals during your original sleep study and the titration study. It's only 3 nights, but your AHI was 8 points lower at the lower pressure on the first night. Is there any chance that the sleep doc wanted you at the lower pressure because he saw centrals at higher ones?

You could try napping with your machine set at a much lower pressure, like 7, and see what it does. If your AHI is lower, you could try it for a night. If it's higher you might want to go up.

I don't know how the machine does with showing data for short periods like napping without the software, though. Perhaps someone else could help you with that part, like how to reset it, etc.

rooster wrote:Third night with A-Flex machine completed. Here is recap of data:

Night 1 - 9/12
Pressure 4 - 10
A-Flex setting 2
Leak 30
90% pressure 10
AHI 25

Night 2 - 9/13
Pressure 7 - 12
A-Flex setting 2
Leak 37
90% pressure 11
AHI 32

Night 3 - 9/14
Pressure 10
Straight cpap setting
Leak 35
AHI 33

I would set it to CPAP@8.0 CM. Above shows as pressure increases so does AHI.

You gotta get the software. Then you will be able to see minute-by-minute what pressures your apneas/hypopneas occur at and when happens as the machine responds to them. Right now you're stumbling around in a dimly-lit room. There is nothing like being able to SEE what is happening, it is a real "eye-opener".

From my own experience I agree completely with RG's view that the minimum pressure should be set close to what you need to clear most apneas. The APAP is just too slow on the draw. And yes, I have to deal with the aerophagia.

rooster wrote:
BTW, after I get up, I have been letting the machine sit for about an hour before it will display the previous night's data in the screen. Is there a way to immediately refresh this data when I get up?

I don't think so, I think the machine "writes" the data to the card after 1 hour has elapsed signaling termination of the session.

It can track up to 3 stop/start sessions per night, I think if the gap between those sessions is 1hr or longer it rolls the data over to the next day (as opposed to showing it as a gap in therapy). But you would only see that if you had EncorePro reports.

[quote="Highnote"]You gotta get the software. Then you will be able to see minute-by-minute what pressures your apneas/hypopneas occur at and when happens as the machine responds to them. Right now you're stumbling around in a dimly-lit room. There is nothing like being able to SEE what is happening, it is a real "eye-opener".

From my own experience I agree completely with RG's view that the minimum pressure should be set close to what you need to clear most apneas. The APAP is just too slow on the draw. And yes, I have to deal with the aerophagia.

Snoredog wrote: and HOW would that be different than the 10 cm pressure on straight CPAP he was on before? Or the settings below which are already well above that?

His AHI only increases with pressure, not too hard to figure it out, if it don't work one way you try the other if things get worse you have gone the wrong way.

On the nights in auto mode, one source of unresolved apneas may have been the machine cruising at low pressure waiting for something to happen, and then taking too long to crank the pressure up when things did happen. It is beneficial to be able to see these and raise the minimum pressure accordingly, as well as see whether apneas increase above some particular pressure.

[quote="Highnote"]You gotta get the software. .........

rooster, have you ever been diagnosed with GERD?

If so, are you being treated for it regularly? And if so, do you think there's any chance you are being undertreated for acid reflux disease?

CPAP air is designed to push aside soft tissue. Can't do much when it hits a brick wall. And that's what nightly acid baths can do to tissue...irritated, inflamed tissue can become swollen and hard. And vocal cords can spasm.

There's such a thing as Silent GERD in which people don't feel any of the typical symptoms of acid reflux/heartburn at all.

Given the kind of AHIs you're getting, I think I'd be looking very seriously at the possibility of GERD interfering with treatment.

rested gal wrote:rooster, have you ever been diagnosed with GERD?

If so, are you being treated for it regularly? And if so, do you think there's any chance you are being undertreated for acid reflux disease?

CPAP air is designed to push aside soft tissue. Can't do much when it hits a brick wall. And that's what nightly acid baths can do to tissue...irritated, inflamed tissue can become swollen and hard. And vocal cords can spasm.

There's such a thing as Silent GERD in which people don't feel any of the typical symptoms of acid reflux/heartburn at all.

Given the kind of AHIs you're getting, I think I'd be looking very seriously at the possibility of GERD interfering with treatment.

Snoredog and some others pushed me to get an upper endoscopy in June. The gastroenterologist discovered silent GERD plus Ectopic Mucosa Within the Upper Esophogeal Sphincter (stomach lining patches in my UES - a birth defect). The GERD seems to be under control with Prevacid daily, elevated head of bed and dietary and behavior changes. That little tell-tale cough that I had for years has gone away.

However, it is certainly something to keep in mind if xpap tweaking does not yield better results soon.

Thanks for the reminder.

Fourth night with A-Flex machine completed. Here is recap of data:

Night 1 - Sept 12
Pressure 4 - 10
A-Flex setting 2
Leak 30
90% pressure 10
AHI 25

Night 2 - Sept 13
Pressure 7 - 12
A-Flex setting 2
Leak 37
90% pressure 11
AHI 32

Night 3 - Sept 14
Pressure 10
Straight cpap setting
Leak 35
AHI 33

Night 4 - Sept 15
Pressure 8
Straight cpap setting
Leak 37
AHI 31

What to do tonight?
-Drop the pressure to 7?
-Put the pressure range at 6 - 10 with the idea to have more data across a range when I get the card read by the DME Wednesday?
-Put the machine in the drawer and try to sleep on my side? .

rooster wrote:Fourth night with A-Flex machine completed. Here is recap of data:

Night 1 - Sept 12
Pressure 4 - 10
A-Flex setting 2
Leak 30
90% pressure 10
AHI 25

Night 2 - Sept 13
Pressure 7 - 12
A-Flex setting 2
Leak 37
90% pressure 11
AHI 32

Night 3 - Sept 14
Pressure 10
Straight cpap setting
Leak 35
AHI 33

Night 4 - Sept 15
Pressure 8
Straight cpap setting
Leak 37
AHI 31

What to do tonight?
-Drop the pressure to 7?
-Put the pressure range at 6 - 10 with the idea to have more data across a range when I get the card read by the DME Wednesday?
-Put the machine in the drawer and try to sleep on my side? .

Drop it to 7.0 and turn Aflex off so you don't starve for air, you need to get the software, I think your AHI "average" you are seeing may not be giving the actual nightly result, only way that would give you a more accurate daily reading would be by clearing the data each day, then it has no choice but to calculate it based upon last session data.

I also suggest you talk to your doctor about the high residual AHI some more, if he suggests another PSG titration I would "insist" on a experienced tech.

If you are seeing this high AHI, I'd be wagering they seen it during your PSG's as well. What are those events? Are they Apnea? Are they Hypopnea? Are they centrals? are they mixed apnea? You need to know, you are not going to determine that from LCD data.

It is really too bad you didn't have access to a PB-420e and Silverlining, at least if they were CA's is would report them, it would also AVOID them and you could tweak parameters to avoid them.

But at this point you don't know what they are. IF it is GERD or paradoxial vocal cord dysfunction as a result of years of GERD.

The reason GERD keeps coming up is how you respond to pressure, it doesn't really change anything with pressure changes, it remains equally bad no matter the pressure (from AHI=25 to AHI=33, there is not much difference there). Your AHI is pretty consistent, consistently bad. You are at severe stage with the machine.

With GERD the events seen as "apnea" or blockage are "stubborn", meaning they don't respond or go away no matter how much pressure you apply or don't apply. That could be from scared tissue or it could be just the way airflow comes in it cannot physically "splint" the airway back open.

Same can be said for centrals if those are present and contributing to that high AHI, you can have those under 10 cm pressure also, sometimes you can blow through them but so far you haven't seen any improvement doing that.

At this point, I would suggest you get your SmartCard to a DME/Doctor that has EncorePro 1.8 and dump a detailed report. Other alternative would be a loaner 420e and silverlining. You should share your current results with your doctor. If your doctor says go back on CPAP at 10 cm, then find a new doctor.

You have to determine what those events are, I bet it is included on your PSG results, you need all the data that came from the lab not some Dr.'s summary report, or contact the lab directly and get a copy from them, if they won't give it to you, call your doctor's office and demand that they call the lab and get them released to you.

It is your health, they either help you resolve your condition or you find someone else.

You will need those actual PSG results for any 2nd opinion you may want to get, you should NOT have to pay for another PSG to obtain those results. You have given your current doctor 20 months and so far his treatment plan has NOT worked. Time to look elsewhere in my opinion.

At this point, I cannot suggest you go out and buy software and a reader, that is just throwing another dart, just find someone/where to get your card read and a report generated. If your DME is cooperative and has a 420e they can loan you for a night or two where you can spit out a Silverlining report you may be able to see what was happening. If that AHI is made up of CA's it will show on that report, on a Remstar they will show up as FL's, Hypopnea or even Apnea, about the only thing it gets right with any accuracy is snores. If you have any events which fall under NR scoring, it is going to take 3 of those in a row, if you don't have 3 in a row they will show up as "obstructive" events. So if that is happening that alone can drive up that AHI score.

What you are "hunting" for by use of those straight CPAP pressure is where the AHI is much lower. Use of straight CPAP pressure is less likely to trigger more Centrals.

Maybe you need a MAD dental device to move your jaw forward? Maybe you need a CT scan or cervical MRI scan to see whats happening down in the lower airway. I'd even call back the GI specialist and drill them on it, what was seen at the UES that could possibly be contributing to this. Maybe you have a dysfunctional nerve or something that could be addressed.

My opinion what you have had to go through is BS, I'd be giving my finger a workout on the phone rattling the GI's cage and the sleep doc and even the DME.

1. Get your SmartCard read and take floppy or pen drive and have them dump the PDF to it, post it so we can see it.
2. Get your doctors to address this problem with progressive steps to getting it resolved.
3. You need to KNOW what is causing or making up that high AHI, if that means another PSG, then so be it, but if you go that route I would make sure you get the most experienced tech at the lab to perform the PSG, if they don't have one, go to another lab. If you have had more than 2 PSG's at the current lab, I would go to another lab and compare. Ask to see what their "sample" report looks like.

Snoredog wrote:.....I think your AHI "average" you are seeing may not be giving the actual nightly result, only way that would give you a more accurate daily reading would be by clearing the data each day, then it has no choice but to calculate it based upon last session data.

.......

At the beginning of nights 3 and 4 I zeroed the data from the display so those two nights are not averages.

Thanks for the advice.