Self adjusting titration levels?

[n9yty]

Hi,

Just posted a rant about my insurance earlier, but now I'm looking the actual CPAP results from the software dump, and I'm not sure I'm happy about those either.

I was titrated and sent home with a pressure level of 9. I don't have the reports from my study (they have not provided them, I am going to push to get a copy when I meet with the doc in two weeks), but over the phone they told me that they tried levels of 5, 7 and 9... At 9 supposedly I had zero apnea events. Well, that doesn't correspond with what I saw myself....

Looking at the dump of data for the past two weeks I am seeing an awful lot of VSI events and, although certainly better than pre-CPAP, numbers of Hypopnea and apnea events than maybe I would like to see. Also, my wife woke me last night in the dark to see if I was wearing the mask because my snoring woke her... I was, and it wasn't leaking. I thought you couldn't snore with a CPAP if it was working properly?

I'm wondering if the pressure is set too low... I have an APAP machine, so I would imagine that I could take control and either put it in auto mode or just notch the pressure up a step or two to see if it improves things.

This may sound like a stupid question, but what kind of trouble can I land myself in if I hit the right buttons to drop the machine into the mode where I can adjust the hidden settings and change something? Is the doc just going to say "Don't do that!" Will I get fined by the DME for modifying their equipment (it's still rented as I understand it). Since you need a prescription to get the machines, if I tweak the settings are there any legal repercussions? I know that sounds absurd, but I've read about plenty of absurd things in our society.

[As an aside, I felt really good the first two days, but lately I still feel tired when I wake up and somewhat throughout the day... Not as bad as before, but not where I was hoping to be. Putting it all together is making me want to try something to see if it helps.]

[GumbyCT]

What was your pressure when you were snoring? What are the machine settings? Be sure to write them ALL down before making ANY changes.

The CPAP Police were disbanded in the 60's by the Johnson Administration. Sunshine is the best disinfectant.

[n9yty]

What was your pressure when you were snoring? What are the machine settings? Be sure to write them ALL down before making ANY changes.

My pressure is 9.0 flat constant. I haven't looked at the hidden settings, wanted to know where I'd stand if I touched them before I even tried. Thanks for the note about the CPAP police being disbanded. Maybe that alone will help me sleep better.

[GumbyCT]

If there is a ramp at a lower pressure, could you have been snoring there? Or sleeping on your back?

[n9yty]

Or sleeping on your back?

No ramp. If I recall the phone conversation where I got a blip-view of my study results (again, still nothing in my hand to reference) My apnea count was highest on my right side and least on my left side, somewhere in the middle on my back. I could have been on my back or right side, my wife doesn't remember and neither do I. But, if they did the study and noticed the variety in apnea events for the different positions, shouldn't they have titrated based on the worst case scenarios?

[boston]

i believe its your right to have a copy of the sleep study.
I got mine when i got the bill from the doctor for reading it, called the doc's office and told them i would not be paying squat until i had a FULL copy of my sleep studay and my prescription in hand.
Their reaction, "what you never got it, sorry" had it in the mail 2 days later.

[BeanMeScot]

Write down your settings then change the machine to APAP mode. You can set it wide open but I wouldn't put the low number less than 5. 5 was too low for me so if you feel like you aren't getting enough air, bump it up until you are comfortable. Then sleep with it for a week or so and take a look at the results. You can always change it back to CPAP mode once you are more confident of the correct pressure or you might find you like APAP better. Either way, it is your treatment. Do what works for YOU.

[rested gal]

But, if they did the study and noticed the variety in apnea events for the different positions, shouldn't they have titrated based on the worst case scenarios?

Yep, they should have.

Also, my wife woke me last night in the dark to see if I was wearing the mask because my snoring woke her... I was, and it wasn't leaking. I thought you couldn't snore with a CPAP if it was working properly?

That kind of feedback from the sleeping partner or spouse is what the people in this study were taught to heed, when making their own decisions at home about where to set the cpap pressure for their treatment:

Link to a study that concluded, "yes."
"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
http://ajrccm.atsjournals.org/cgi/reprint/167/5/716

They weren't using machines that could give them any info at all...not from the LCD or from software. Yet they were able to adjust their own pressure effectively.

[Amigo]

It is very important for you to take control of your own treatment. Fortunately, you have a machine that will let you do just that.

If you're concerned about changing the settings, just be sure to write everything down before you change them, then if the machine ever has to be returned to the DME, you can put the settings back to their original numbers.

After five years, and over 13,000 hours on a straight CPAP at a setting of 12, I recently became the owner of the same machine you have. Thanks to Wulfman (Den), I also have the Clinician's Manual. I have already made adjustments since my DME pressure settings of 10 - 14, were causing some problems falling asleep as my body apparently was pre-conditioned to a constant pressure of 12. After several weeks of checking the stats, I found that my pressure requirements never fell below 11.2, and never rose higher than 12.4.

I have now changed the pressure range to 11 - 14, and have had no more problems falling asleep. After a few more weeks, I may tweak it again to 10.5 - 14. My AHI is staying at a constant 1.1, so I'm a happy camper.

Good luck, never hesitate to ask questions, and please keep us posted on your progress.

Bill