Newbe with Complex Apnea

[racprops]

Something interesting has happened: I WOKE IT UP!!!

The first two nights the machine seemed to playing at it.

Tonight it is now running more like the machine used on me in the second sleep study.

I made two changes, I set the low EPAP Min. pressure to 7 and the PS min to 2.

I had found that it seemed like I was not getting enough air on 4/5 during the ramp up feature and I like 7.

BUT now when I inhale it really flows and pushes up the face mask, the mask is doing push ups with every breath..taking some getting used to that, it did not seem to do as much earlier.

Also if I skip a breath it really pumps up, I had to tighten the mask as it was causing a leak.

I had not felt the action of the machine dealing with a non breath event until now.

Comparing the first two days it was like it was in low gear, now it is in top gear.

All of this must be changing the PS min from 0 to 2 as It was running on the ramp feature from 4 up to 10 and was not reacting like this. Nor was I feeling it even when it finish the ramp up feature.

Interesting...

Rich

PS well I am going back under the mask and try to sleep all night...wish me luck.

[racprops]

I am beginning to fear something maybe wrong.

I found I could not get to sleep with the mask doing pushups and reset the PS min to 2 back to 0.

That lowered the amount of pushups or how hard they are BUT not the seemly unprovoked pressure run up.

It seemed to just doing it with no cause, I sat and watch the readout go up and down 7, 7.5, 7, 8, 7,9, 7 and then 12...

I fear I may have damaged some of the sensors as I had a surprise coughing fit and I could not unmask in time.

I have not read anything warning not to cough with the mask on but it has been acting up every sense.

I am trying a hard reboot, I pulled the plug and will power it back up when I am ready to try again.

Drat...drat..

Well here I go again.

Good night.

Rich

[JohnBFisher]

Sadly, it's not unusual for the techs to improperly set the pressures on the ASV units.

As I noted in my PM, I am having computer issues. I will try to respond in more detail today. But that depends on my computer.

[JohnBFisher]

Well, I didn't "fix" my computer problem, but I've isolated it to one SATA port/cable. It just happened to be the port/cable for my system drive, so it would not boot. But I moved the drive to another port/cable. I will go back and try to figure out if the problem is due to the cable or is it the port on the motherboard or the removable card cage that's having the problem.

But for the purposes of this post, I'm up and running and able to offer some advice ... Remember, this is what I would do if I were you. I highly recommend that (a) you keep very detailed logs of what you do, the resulting numbers, how you feel the next day, and try the settings for several nights before changing anything ... I also recommend (b) that you discuss the changes you made with your doctor in the future. But this assumes your doctor is able to accept that you can scientifically test changes. Not all of them are open to having the patient make changes.

Now, you are almost there .. as far as settings go.

It sounds as if they set the EPAP min and max to the same settings (which results in only one EPAP pressure). The Phillips Respironics System One ASV unit (both the Model 50 and 60) offers the ability to auto adjust the EPAP to meet your needs. That is, if your obstructions increase, it can increase the pressure. It sounds as if you found that the setting that seems to work best is 7cm H2O for the EPAPmin. I would set the EPAPmin to that. But then set EPAPmax to 10. This will allow the unit to increase pressure only when you have serious obstructions. Then typically PSmin should be set to 4. The current EPAP pressure plus PSmin is the IPAPmin value. You don't set IPAPmin, that's the calculated value based on the current EPAP and the PSmin. If you have a central apnea, then the unit will fairly quickly increase the pressure upto current EPAP plus PSmax. In your case, I would set PSmax to 13cm H2O. The current EPAP pressure plus PSmax is the IPAPmax value. Again, you don't set that value. It's the calculated value based on those two values. Then additionally, I would set the MaxPressure value to 20cm H2O. Thus, if the current EPAP is 10cm H2O, the IPAPmax would be calculated at 23cm H2O. But the MaxPressure overrides the value and only allows the IPAPmax to reach 20cm H2O.

Finally, I would recommend keeping BPM "as is". I tend to recommend it be set to AUTO, since that works for 90% of the folks with an ASV unit. Sometimes it needs to be set, but normally the ASV unit default works well.

Why do it this way? Well, with complex sleep apnea you need enough pressure to keep your airway open but not too much, since that triggers the central apneas. This will allow the machine to keep the EPAP as low as possible, without triggering central apneas. But when they do occur, it steps into the picture to help keep you breathing. By jumping the pressure high, it helps the exchange of CO2 and Oxygen. This helps break the overshoot / undershoot cycle. When the pressure causes you to stop breathing this builds up your CO2 levels. Your body eventually realizes that the CO2 has built up too high and starts you breathing again, but you (and everyone else with central apnea issues) tends to hyperventilate (just a little) .. your body is playing "catch up". This causes you to blow off more CO2 than normal .. which triggers another central apnea .. and around and around and around we go. By helping with the exchange of CO2 and Oxygen (by acting as a ventilator for a few breaths) it helps break this cycle.

Anyway, I hope that helps. Remember, make changes slowly and record the numbers from the machine and impact on you the next day.

[racprops]

I see what you saying.

I found that the setting of 10CM for EPAP Min unuseable, I was having trouble breathing at that pressure, specially exhaling.

I have reset the system to:

Min EPAP: 7.0
Max EPAP: 13.0
Min Pressure Support:0.5
Max Pressure Support: 10.5
Max Pressure: 20.5
Flex Setting: 3
Backup Rate: auto

I find these livable.

I will try a few days at these settings and keep track.

Thanks.

Rich

[racprops]

OK Does anyone have a GOOD pulmonologist in Phoenix AZ.

Rich

[racprops]

A little better night.

Was able to fall asleep in my own bed for the first time and slept from 11:00 to 1:30, then went back to sleep and slept to around 3:00.

Woke up with a few pains and am working the off here at the computer.

Now to do the report after more sleep.

Rich

[JohnBFisher]

Rich, it's encouraging to see that you are making some progress. As I've noted, it takes two to three months to become mostly adjusted to ASV therapy. You seem to be making good headway. So, hang in there.

But as I've noted, it's not a "cure all". You'll occassionaly find me posting here in the middle of the night. But I know that without it, I probably would have already dropped dead .. I was DESPERATE for sleep when I was diagnosed and in VERY bad shape. I still have a long way to go, but am much more optimistic about hanging in there. And I know I'm not alone in that feeling. So, we do understand and care about how you are doing. We don't want to see anyone else suffer, since we understand just how bad that suffering can be.

[racprops]

This does NOT look good….

I am NOT getting any better.

IS this normal for getting used to this?


I believe I had everything set up right last night:


Pressures at sleep test and Doc’s best numbers of 9/15.

I was able to stand and tighten my mask so that it held at the highest pressures, at 18cm by the units readout.

I sleep on my back all night.

BUT it was the 2nd worst night so far.

I had 213 CA, 52 Hypopnea, 31 OA, 18 breathing events, 836 Pressure Pulse events, and 80 snore events.

My AHI is 46.19.

Here is a picture of my sleepyhead report, can some of you tell me how this looks and if I can do anything to help myself or do I just have to hold on and let my body adjust to the machine?

[racprops]

I am running all of this though my mind…

The second sleep study reported better results.. but less data…

Is my personal machine more sensitive?? It seems to report more events like shoring which the sleep studies seemed to report no snoring..

I seem to have a better night (number wise) sleeping in my recliner..

So tonight I will return to my recliner and see.

Has anyone found they do better in a near chair like sleep position?

My heart surgery caused my sleeping in my recliner, it is a side effect from this surgery, and while I waited for my sleep studies we SEEMED to see less apneas when I sleep in a more upright position.

Rich

[JohnBFisher]

Clearly your central apneas follow the increase in pressure. You can see it in the graphs.

I also tend to find a recliner is better for sleep than laying down. But then my problem is not obstructions, but pain in my lower back.

At this point, I agree that you should see how you do with sleeping in the recliner.

One additional thought. You mention tightening the mask. Do you have a mask liner (or liners) for it? That really does help.

In the long run, you will need to talk with a sleep doctor that understands how to handle stubborn cases of complex sleep apnea. I wish I had more. But you are doing what I would do in your situation. I just can't think of anything else at the moment.

[racprops]

OK For the first time I seem to making some progress:

I have tied my CAs to my EPAP setting.

By lowering my EPAP MIN to 6.5 I have been able to go from 33.37 to 6.90, and twice, first time for about 2 hours in bed and the second was 3 hours in my recliner.

This also checks with a couple of days ago when I set the EPAP Min to 7cm which I only had 10.25 CA events.

The other days with 8 to 10cm for my EPAP has given me: 10cm=30.45, 8cm=32.3, 8cm=33.37 CAs

My AHI Has run: 10cm=36.61, 7cm=23.83, 8cm=48.08, 8cm=46.19 and 6.5=20.88

It will be interesting to see what my Doctor says today when he reads these reports.

Rich

[JohnBFisher]

Rich, just remember that some doctors will react quite negatively when you provide clear and scientifically gathered data. I would recommend gathering at least a weeks worth of data at the best possible setting. It will show that you are relying on more than just a few hours of data.

But if your doctor continues to feel threatened by the data you present find another doctor. You want a doctor that is willing to work with you to get the best possible therapy. Having a doctor react badly to you managing your own therapy (if done scientifically) is like having a endocrinologist react to a diabetic bringing in blood glucose readings and showing how changes to diet and exercise and amount of insulin helped improve their therapy. The comparison is quite apt, since both can be life threatening. It's just that most sleep doctors have not realized the implication of having data capable machines.

[racprops]

Well he did not like it.

In fact at one point he said if I was not going to do as he tells me to do I can find another Doctor…

When he saw I was not falling apart and crying “forgive me please” he then tried to convince me he was right and I loved this one.”You cannot come in here with one night’s results and say your settings are better… “

Funny as he prescribed from one nights study and from one 18 minute run at the pressures he prescribed, where I had 6 + hours of data. And I had 6 days of data clearly showing a lower EPAP pressure caused a lower CA events.

As well as all the other events. AND my CA were of much short duration to boot. As were the others.

I think I will be opening my own clinic soon.

Rich

[racprops]

Well if this doesn’t frost my cookies.

I said to someone I know that trying to set up and use this ASV-PAP machine and my reactions to this treatment is like when I was involved with trying to get 50+ MPG out of a car.

One day you making great progress and the next day with no seeable rhyme or reason it all goes crazy.

I have not changed a single thing: BUT tonight’s report of my first sleep season was one of the worst, or seemly so as in one hour and 35 minutes I have had 33.98 CA, 1.26 OA and 11.33 HY and 8.11 PB/CSR (Cheyne-Stokes Respiration I don’t like the sound of that)… my AHI is 46.57!!!

Am I nuts or is that as bad as I think it is.

The ONLY good note is none of these events are long, in fact they seem very short. They were longer a couple of days ago.

Rich