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Disappointed in my sleep Doc
#1
Disappointed in my sleep Doc
Okay, maybe I'm expecting to much, or maybe I overstepped?

I've been on CPAP since 10-12-2018. not that long in the scheme of things. I've been hanging out on this site and others trying to learn and understand all I can about this thing called Sleep Apnea.  One of my first and earliest problems was using EPR. It wasn't comfortable and when I used it my Hypopnea's and RERA's were higher then when I turned it off. Even after turning it off they are still higher than my OA's. My maximum pressure is 14 and the min according to Sleepyhead is 7.26.

I did some research on here and on some other sites and from the information I could gather everything pointed to raising the the minimum pressure. So, I called and made an appointment with my sleep Doc to change the settings on my machine. He complemented me on my compliance, and that my numbers were good. Said he noticed I had turned off EPR and I explained why, but that I didn't want to mess with the pressure and he said good. I also explained why I wanted the change and the reasoning behind it. He nodded and proceeded to ask other questions and making changes on my machine. He mentioned air leaks and asked if my mask was slipping. I haven't had many problems with my mask as far as I know. Anyway that was pretty much the end of the visit and I scheduled an appointment in 6 months.

When I got home I checked the settings and he had turned the EPR back on and turned it up to 3. Why didn't he discuss this with me after I had already told him I had problems with using the EPR? Also in looking into the setup of my Air Sense 10 you can only adjust the min pressure in autoset mode not in CPAP mode. Right now I'm setup to use CPAP mode.

Not sure what to think. It makes it kinda difficult to trust someone when they do this to you. Maybe it was a slapdown for turning off the EPR to begin with? If that's the case then explain why I need to get used to it, don't crank it up even more with no explanation. I'll give him the benefit of a doubt and try it out tonight and see what happens, but I'm not looking forward to going to putting that mask on for the first time.
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#2
RE: Disappointed in my sleep Doc
To see what is going on we need to see data. Please install SleepyHead, organize your charts (very important) and post your nightly charts. How to is described in my signature.

Also post the full version of your sleep studies not just the summaries.

Your doctor's behaviour is not uncommon. To s÷ if it makes sense we would need to see the data.
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Disappointed in my sleep Doc
I'd be not happy of the doc changed back a setting I changed, regardless of his acceptance. I learned here what my ASV machine settings were, and they will stay there. My pulmonary doc is only concerned about if it's producing good sleep or not. He knows I adjust my own pressures and doesn't care as long as what I do equates to good sleep results.
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice. Even a 1,000 mile trip requires a good first step. My recommended first steps include getting good walking shoes, 1 great cup of coffee, and a good GPS.

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#4
RE: Disappointed in my sleep Doc
I've attached 3 screenshots from Sleepyhead. I included last night after the changed EPR and 2 nights before the change, 1 good and 1 not so good.


           
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#5
RE: Disappointed in my sleep Doc
I believe you need a BPAP machine like a VAUTO. You have high flow limitations and high minimum pressure requirements. Your current machine isn't going to be able to make the adjustments required. The Doctor sort of had the right idea about turning on the EPR. Problem is that it's limited. Also he set your minimum pressure way too low.
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#6
RE: Disappointed in my sleep Doc
I think your doctor and I are going to be on the same page with regard to EPR. You have abundant flow limitations that EPR and bilevel pressure support can diminish. In addition, bilevel therapy has been the most effective tool in treating individuals with UARS, and its related flow limitation and RERA. http://www.apneaboard.com/wiki/index.php..._and_BiPAP

I think that article will help explain the thought process behind your doctor's advocacy of EPR, but he should have explained it, and been forthcoming about making changes. I agree with Walla, that bilevel makes a lot of sense, but not if you don't tolerate the pressure support.
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#7
RE: Disappointed in my sleep Doc
I've had some thoughts early on about UARS myself. I'm wondering if I change the mode on my machine to auto and set the min and max would that work as a bilevel? At this point what do you think my chances are of getting a new machine? I would think they would be slim to nil considering the doc didn't even discuss the change he made with me before he changed it.
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#8
RE: Disappointed in my sleep Doc
On your machine, the minimum and maximum pressure refer to CPAP pressure, where IPAP are EPAP are equal.  EPR gives you the option of a bilevel, limited to 3 cm of pressure support.  In the case of EPR, pressure is subtracted during exhale, rather than added during inhale as with pressure support.  For example, if we set your minimum and maximum to 14 and 18 respectively, the delivered bilevel pressure is 14/11 to 18/15 (IPAP/EPAP).  

Your doctor may have made this change to see if it makes a difference, and whether you tolerate the bilevel pressure comfortably, and without the side effect of centrals.  I would have recommended the same thing, but would have discussed it.  Getting a bilevel is mainly about your tolerance and efficacy on CPAP.  You have to fail CPAP first.  There is every indication you may benefit from bilevel, but if you shut it down and complain it's not comfortable, then there is no reason to pursue it further.  If you want to have a shot at bilevel, give EPR a chance, in a higher pressure range where it can make a difference.  If it is beneficial in reducing flow limitation, and increasing comfort, then bilevel may well be the tool that completes the job. In your charts, you appear to tolerate EPR, but it does not adequately treat flow limits and hypopnea, and you continue to have a high OA rate. This suggests a need for pressures higher than 14/11, thus my suggestion for auto mode at 14-18 with EPR 3. Once you go above 15 cm pressure, you are firmly in the realm where bilevel may be considered.

The clustering of events may also suggest a positional apnea issue, and you might want to consider a soft cervical collar.
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#9
RE: Disappointed in my sleep Doc
I agree with the assessments above. You need the EPR or in BiPAP terms Pressure Support (PS) tooop manage the Flow limitation .
I also see a possible positional element to the bulk of your apnea as demonstrated by the clumps of events in all 3 charts that I would rather fix after you are in the better machine for your apnea.

CPAP is limited to 3 cmw for EPR. Where BiPAP is capable of much higher Pressure Support which is used to manage Flow Limitations.

You want the near instantaneous drop. In pressure from EPR and PS not the gradual change reacting to events from auto mode to manage Flow Limitations

Very important now is how do you feel. Is the CPAP improving your sleep or is the Flow limits interfering too much. That is the conclusion we want your Dr to make.

ask him if he can up the EPR more to say 4 Or 5 and let you try that. ( he can't but that will put the VAuto thought in his head)
New to Apnea? Helpful tips to ensure success
Mask Primer
Dealing with a DME
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Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: Disappointed in my sleep Doc
Ip agree 100% with Sleeprider's suggested settings and the soft cervical collar but I would rather wait to implement them and see what your Dr does. I do not want to drive your numbers to under 5 AHI which will "say" that you are treated satisfactorily with this machine. Which BTW is the best for common obstructive apnea.

My goal is to help you get the right machine and then do exactly what SR suggests

Fred
New to Apnea? Helpful tips to ensure success
Mask Primer
Dealing with a DME
Download SleepyHead
Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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