My CPAP Story

cpaptex · Post by **cpaptex** » Fri Dec 09, 2011 8:55 am

Last night I had 22 events in 22 minutes. I took off my mask for several hours when the bridge of my nose started to hurt. When I woke up I put the mask pack on and the events started up. It also conincided with multiple sessions of Periodic Breathing during the 22 minutes.

As you can see none of the events were OA events. They were mostly Clear Airway Events and a few Hyponeas. The pressure didn't really ramp up and I didn't see any real leaks.

cpaptex · Post by **cpaptex** » Sun Dec 11, 2011 1:56 pm

I'm sorry for bumping this to the top. I'm just looking for someone to tell me whether or not I should talk to my Pulmonologist about this Periodic Breathing pattern that when on for 22 or so minutes.

Has anyone experienced this?

Lizistired · Post by **Lizistired** » Sun Dec 11, 2011 2:09 pm

cpaptex wrote:I'm sorry for bumping this to the top. I'm just looking for someone to tell me whether or not I should talk to my Pulmonologist about this Periodic Breathing pattern that when on for 22 or so minutes.

Has anyone experienced this?

I would! They are all centrals so there is nothing the cpap can do for them. Is that your titration pressure? He may lower your max pressure some. Are there meds that could be involved? I wouldn't think so for such a short period of the night.
That said, until I got really comfortable with my machine and got dialed in, I had clusters of CA's when I first went to sleep and shortly before I woke up.

cpaptex · Post by **cpaptex** » Sun Dec 11, 2011 2:33 pm

Lizistired wrote:
cpaptex wrote:I'm sorry for bumping this to the top. I'm just looking for someone to tell me whether or not I should talk to my Pulmonologist about this Periodic Breathing pattern that when on for 22 or so minutes.

Has anyone experienced this?
I would! They are all centrals so there is nothing the cpap can do for them. Is that your titration pressure? He may lower your max pressure some. Are there meds that could be involved? I wouldn't think so for such a short period of the night.
That said, until I got really comfortable with my machine and got dialed in, I had clusters of CA's when I first went to sleep and shortly before I woke up.

The pressure started at 8.5 when the events started, the machine kept bumping up the pressure to a max of 11.5 when I woke up. My 90% is 10 and the range for the machine is 8.5 - 11.

Lizistired · Post by **Lizistired** » Sun Dec 11, 2011 2:37 pm

That's interesting. I wonder why your machine increased the pressure without the airway being closed.

cpaptex · Post by **cpaptex** » Mon Dec 12, 2011 11:18 am

The DME changed my CPAP machine to a fulltime Auto CPAP per my Dr. this morning, it was one that was Auto for the first 30 days only. We are now dealing with the Periodic Breathing issues. Unfortunately, my Pulmonologist is scheduled to work in the Hospital all this week so I'll be dealing with the PA for the moment.

It's movement, so I'm happy... for the moment.

Lizistired · Post by **Lizistired** » Mon Dec 12, 2011 11:21 am

cpaptex wrote:The DME changed my CPAP machine to a fulltime Auto CPAP per my Dr. this morning, it was one that was Auto for the first 30 days only. We are now dealing with the Periodic Breathing issues. Unfortunately, my Pulmonologist is scheduled to work in the Hospital all this week so I'll be dealing with the PA for the moment.

It's movement, so I'm happy... for the moment.

You mean he changed it from auto to cpap? What is the new pressure?

cpaptex · Post by **cpaptex** » Mon Dec 12, 2011 11:59 am

Lizistired wrote:
cpaptex wrote:The DME changed my CPAP machine to a fulltime Auto CPAP per my Dr. this morning, it was one that was Auto for the first 30 days only. We are now dealing with the Periodic Breathing issues. Unfortunately, my Pulmonologist is scheduled to work in the Hospital all this week so I'll be dealing with the PA for the moment.

It's movement, so I'm happy... for the moment.
You mean he changed it from auto to cpap? What is the new pressure?

No, it was already "Auto", but for just the first 30 days. My Dr. wants it to stay as a AUTO so the DME had to change it to a FULLTIME AUTO Unit. The pressure range remained essentially the same, 8.5 - 12. My 90% is 10.

So to answer your question, it went from a Temporary Auto to a Fulltime Auto. It was a regular CPAP with a 30 day Auto feature. Initially they had it set a 6. I was gasping for air. They moved the startup to 8 and it would ramp up to 10 and occasionally jump up to 15. The highest was 17 and I woke up and took the mast off.

It's not a perfect science. But I've learned to be my own advocate. Too many issues going on for me to understand them all.

Lizistired · Post by **Lizistired** » Mon Dec 12, 2011 12:32 pm

So he raised your minimum and lowered your max... that should help with your comfort and hopefully with the periodic breathing. Good luck tonight!

archangle · Post by **archangle** » Mon Dec 12, 2011 1:38 pm

Try to get someone who actually understands periodic breathing to look at the actual flow waveforms, not just the numbers scored by the machine.

Make some printouts. Unfortunately, the stupid Respironics software tends to only display the latest day or two of waveform data, so the doctor may not see the PB waveforms if you give him the card and he uses the official software. Make printouts of the PB waveforms at various zoom levels.

cpaptex · Post by **cpaptex** » Mon Dec 12, 2011 4:19 pm

Archangle, I just got back from dropping off the printout at the Drs office. The receptionist actually said to me that the DME usually sends them the printout. I informed her that I had already spoke to the PA and let her know that I was concerned about the waveform that I saw. She asked me a few questions about the software and said to call her back once I got the fax to her. The don't use e-mail, I thought that to be strange. Anyway, I'll be calling again in the morning to speak to the PA. But I'm going to do as you suggested and send an even smaller section of 5 minutes so she can see the detail via fax when I get home.

jedimark · Post by **jedimark** » Mon Dec 12, 2011 10:37 pm

I've been making some report changes in SH, which you will see in the next version.

Now, when you print from Daily view, it will ask if you want to show all your bookmarked sections of Flow Waveform.

Hopefully will help in cases like this..

cpaptex · Post by **cpaptex** » Tue Dec 20, 2011 9:33 am

Thanks Mark!

After a little over 1 month of using the CPAP. Here's a few things that I've noticed:

1) I'm NOT SLEEPY all the time.

2) My Fog is clearing up.

3) My Heart Rate has dropped from 115+ to 80+ (At Rest)

4) My Blood Pressure has dropped from 130/95 W/meds to 120/90 with meds (Not much, but it makes me happy)

5) My Blood Sugar has dropped from 195 w/meds to 140 w/meds

6) I don't wake up 5 or 6 times a night anymore

7) I'm dreaming alot and remembering them

teknomom · Post by **teknomom** » Tue Dec 20, 2011 11:20 am

I'm so happy for you! It gives me hope that the fog will lift in the future (I've only been on my machine 6 days). Good news about the other health benefits, too!

Teri

cpaptex · Post by **cpaptex** » Wed Jan 11, 2012 7:49 am

Let me see if you can figure out when I changed from a CPAP with Auto (for 30 days) to a real Auto CPAP. Real DRAMATIC difference. I wonder if it's just an unfortunate Algorithym and was I being properly treated.... I'm now using the Respironics System 1 PR1 Auto, it was the PR1 CPAP with Auto (for 30 days). The end of the period creeps up, why? Did it autoadjust the wrong way.

Did anyone else notice this? Was my old machine defective? Or was it just my body playing games.

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