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Permalink Reply by Judy on April 17, 2009 at 10:46am

Robert Cooper said:
"...what is the meaning of without bilevel titration factory was set at 4 salesman changed to 3 for ps, so I thought it was starting at 6 epap and IF NEEDED by obstruction going up to 19 ipap, that wrong or bad?"

These xPAPs come from the factory set at what are called Default settings which are just the most common settings needed. Then it is up to the local DME supplier's RT to adjust whichever settings the sleep doctor determines via the titration study results to your individual needs.

Your Auto 25 is set to provide 6-9 cms of pressure when you exhale and 16 to 19 cms of pressure when you inhale. The EPAP starts at 6 cms when you exhale but could go up to 9 cms if needed due to your Pressure Support setting of 3. Its rather complicated.

The most common method is first an in-lab overnight sleep evaluation where you sleep w/a bunch of leads, etc. on. Then if you sleep evaluation detects a sleep disorder such as OSA you are usually brought back in for a second in-lab overnight study where you not only have all the leads, etc. but also are given a mask and they use the xPAP to "titrate" what your pressure needs are. Titrate means to adjust the pressure until the find the pressure(s) that eliminate or greatly reduce your apnea events.

Occasionally they will do what is called a split-night study wherein you spend one night in the sleep lab, half of which is just w/the leads, etc. and then the rest of the night they have you sleep w/the mask and the xPAP and during this second half of the night they "titrate" (adjust) the pressures until they find the pressure(s) needed to eliminate or greatly reduce your apnea events.

It sounds like they determined during your titration study that you needed an expiration pressure of 12 and an inhalation pressure of 19.

Evidently they weren't that confident that their titration of IPAP 19 and EPAP 12 was as accurate as they would like - but it still seems odd that they would set your auto bi-level's EPAP at 9. Usually I've seen it recommended that the lower pressure setting be just 1-2 cms below the titrated pressure.

Again, I'm "just" a patient!!! Rock and Duane would know better than I.

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Permalink Reply by robert cooper on April 17, 2009 at 12:59pm

ok here is what happened, I HAVE NOT seen the report as of yet the TECH set the machine with a epap of 12 and a ipap of 19 with a 3 support, IT WAS I (ME) that thought why would I want a starting point of 12, they explained it like this to me if IT went to 12 then my EXHALE would always be 3 higher. That is what the 3 does, SO I figured being and auto and I had air stomach gulping before then WHY would I want my machine to start at 12, when it senses the restriction anyway and would eventually get to where it needed to be up to a high of 19.
Did I screw this up? It was me that set the original epap from 12 to 6, thought I could tolerate it better and less stomach air, maybe i screwed it up you tell me, I started the machine when I got home the 1st day and watched the numbers immediately raise to 0-12 and stay there till the 10 minutes settle was over, IN MY MIND I thought that 12 was the minium pressure to get over my apnea and 19 was the highest number, maybe it was me that was wrong..................

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Permalink Reply by Judy on April 17, 2009 at 1:58pm

Ah, that makes more sense then, Robert Cooper. Its hard when we get these new toys NOT to play w/them when things aren't comfortable. And I'm as impatient a patient as you will come across. BUT - when we don't understand just what we are doing we CAN make things much worse instead of better. That's what I DON'T like about these sophisticated devices. It was so easy to tinker w/my CPAP to get my best therapy w/it. It was easy to tinker w/my APAP and get better therapy w/it than what the "pros" came up with. But when things were going well in VPAP Auto mode and the dirty birds insisted I swtich to Spontaneous mode which turned out to be so darn uncomfortable and disconcerting but they couldn't come up w/any answers but "sleep with it" ......

Yeah, if I were you, I'd put your Auto 25 back to the original settings as scripted. Give it AT LEAST A WEEK at those original settings. Then, if you're still experiencing the aerophagia get a hold of your RT or whoever set your Auto 25 up and tell them, this isn't working, what changes do we make? The data from your Auto 25 will help him decide what to discuss w/the doctor who is the one who must order the change.

My sleep doctor let me sleep happily for 3 months in Auto mode and THEN insisted I switch to Spontaneous mode and that is when the "fun" - NOT - began. I was a good girl for 3 months of misery and then said to h*ll w/it and asked for a consultation at a major, leading health clinic I went to for my Crohn's disease. THAT turned out to be a mistake as the sleep doctor there was NOT of a calibre deserving to be at that clinic! It did however result in a better titration - except that jerk doctor also insisted on Spontaneous mode. With no better results. But I gave it the old college try before I said to h*ck w/it but wasn't sure just what titrated pressure settings to use in Auto mode. The recent titrated pressure wasn't cutting the mustard in Auto mode either. But going back to the original settings in Auto mode weren't quite doing it either - just both better than the recent titration in Spontaneous mode. So ... I set EPAP at the most recent titration's level and IPAP at the original titration's level but didn't have a good understanding of how Resmed's Pressure Support worked. So its been 13 months getting to the good sleep and comfort level I'm finally at. It would have been so much easier if I hadn't gotten discouraged and frustrated w/the sleep doctors and gone back to them for help - but if they had been more responsive and LISTENED to what I was telling them about the Spontaneous mode therapy instead of just telling me to "sleep w/it" I would have been more responsive to and cooperative w/them. Respect is a two way street.

By all means TRY working WITH your sleep doctor and RT first - IF that doesn't work out - well, then - we do what we gotta do.

So much of the problem is that the doctors don't work w/these xPAPs and they most certainly do NOT have the experienced w/every brand and model available and yet they are the ones who HAVE to call the shots. The RTs who provide the devices and sets them up and has the most contact or availability to the patient can NOT legally change therapy settings on their own even tho they know the xPAPs' capabilities w/o instruction from the clueless (about that xPAP) sleep doctors. And then add to that most RTs have limited experience w/many of the xPAPs and their capabilities .... no wonder sleep medicine is the disaster it is.

Okay, off my soap box. Get back to your original therapy settings, GET THOSE LEAKS UNDER CONTROL, give it a week, if they aren't working out get w/your RT and sleep doctor and try working w/them. Good luck!

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Permalink Reply by Judy on April 17, 2009 at 2:22pm

Thanks, jnk, but I just confessed to my "sins" and you have a much better grasp on how these darn VPAP Autos work. The key is we both agree, even as patients, its best to work WITH and THRU our sleep professionals if at all possible. And I'm sure that jnk joins me in hoping that you have a good sleep doctor and RT, Robert Cooper. They CAN make like a lot more easier if they are any good. (Sorry, I had to add that as my experience hasn't been ideal and it tends to color my confidence in the sleep profession except for the RPSGTs).

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Permalink Reply by robert cooper on April 17, 2009 at 2:43pm

ok set from 6 to 10 will LOOK at ONLY ai's for now GOT AN ASS reaming from docs nurse on resetting numbers she said you just changed the script OH yea I said lower so it is not bad, MADDDDDDD she was, just explained I did not want air swollowing again, so setting at 10-19 3 diff pressure and will read new #s in am thanks for now sorry about any confusion this may have caused

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Permalink Reply by Judy on April 17, 2009 at 3:18pm

Well, I have to admit to being a pretty stiff-necked ole broad who doesn't take "attitude" from someone I am PAYING very well. HOWEVER, she was right. BUT she SHOULD LISTEN to you about the aerophagia and YOU SHOULD ask that your sleep doctor come up w/a solution However, if she had given me an "attitude" I'm afraid I would have reminded her that it was HER job to see to it that I got the therapy changes made to make compliance possible for me by finding the method to alleviate the aerophagia. DIPLOMACY and TACT go a long way in establishing a good working relationship. You can catch more flies w/honey than w/vinegar. Unfortunately, diplomacy and tact are not always my forte. Which I'm sure contributed to my not getting the best response from the sleep doctor I encountered at my last titration. But I will NOT be talked down to by someone I am paying and being told I ask too many "unnecessary questions" or that my question is "irrelevent".

Try just telling them, nurse and doctor, look I need HELP and I'm hoping YOU are going to provide it. I WANT to make this work but ... YOU have got to make it possible for me to do so. I'll work w/you IF you will work w/me.

Sometimes when we are wrong we have to swallow a little crow - but don't anyone try to cram the crow down my throat. I'll eat it at my own pace, thank you.

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Permalink Reply by Judy on April 22, 2009 at 2:03pm

Goshes, jnk. I don't know where my original reply to you went!!!

Thanks for the offer. I'm a pretty tough ole broad and so far have managed to hold my own w/the medical profession. They are pretty easy to "fire". Tho I admit there's been one or two I really would have enjoyed giving a good kick in the shins on my way out. *wicked grin*

I'll keep you in mind for a back up just in case!!!

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