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[CPAP] New and need some help lowering AHI
#91
Notes and Talking Points for The Doctors Appointment:
(any/all feedback is welcome and encouraged)

===========================================
Prior to this compliance period and beginning APAP/CPAP therapy:

- I have limited daily caffeine intake (1-2 cups of coffee) to 12 noon or earlier
- I also have completely ceased alcohol consumption for the duration of this compliance period
- I’m also not taking any prescribed or OTC medications of any kind
- I increased daily water consumption as well.

General Outline of Compliance Period:

- On prescribed default APAP from Nov 10 - Nov 23rd w/Nasal DreamWear mask
- Got a cold and was unable to use the machine at all from 24th-27th
- New mask Nov 28th AmaraView 28t(due to difficulty with deviated septum)
- Went 2 more days 28th – 29th with default APAP settings
- Nov 30th taking into account my pattern of CAs I started self-titration

**It’s important to note that I attempted getting ahold of my APAP supplier and my doctor prior to any self-titration attempt. To this point in time I experienced great fatigue, dizziness and persistent daytime headaches that I didn't experience prior to being placed on the machine.**

Beginning on Nov 30th I started with an adjusted range of 7CM-12CM APAP.

Over the next several days and various pressure ranges I noticed a pattern of various events (great majority being CAs) during and immediately after auto pressure changes.

Dec 7th I finally switched to CPAP mode 7.0CM EPR Off and saw immediate improvements with regard to the CA events, which dropped by more than half

As I experimented really any notch below 7.0CM I experienced a return of Hypopnea and RERA events; this told me that 7.0CM was as low as I could go in an effort to resolve CA events

In an attempt to improve upon my results at 7.0CM I switched EPR back on; my findings are that EPR 1 ____________ my overall results (doing this test now)

I recorded several days and nights of Pulse Oximetry data and observed Sp02 data between 96-98 consistently in the day, but an Sp02 average of 92-95 at night.

Side Note: While I battled with mask rainout for a few days I’ve since resolved that issue.

Conclusion:
While my recent AHI has ranged from 1.5-2.5 on current settings, my RDI has still been 3-4 because of the presence / return of RERA events.
Dropping my CPAP pressure below 7.0CM trades CAs for RERAs negating any benefit

After maximizing any total benefit of my current machine and observing the persistence of Respiratory related events, it’s my opinion that alternative treatment will be necessary. i.e. ASV titration sleep study
===========================================

Okay let me have it. Please be as open and blunt as possible. This appointment is a big deal and I really need to convey a strong stance here.

Thanks again for all the help!
~Casey
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#92
Some docs may do better with a visual display of your time frame in addition to the write up. If you use something like Excel or Google Sheets, you can color-code, outline, or annotate various periods of your timeline to display what was happening along the way.
                                                                                                                                                                                  
Please organize your SleeyHead screenshots like this.
I'm an epidemiologist, not a medical provider. 
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#93
(12-12-2016, 08:08 PM)Beej Wrote: Some docs may do better with a visual display of your time frame in addition to the write up. If you use something like Excel or Google Sheets, you can color-code, outline, or annotate various periods of your timeline to display what was happening along the way.

Beej,

That's good advice. I'll be sure to add that. I was honestly considering bringing my MacBook to point out the areas of interest in person.

~Casey
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#94
Casey, Look at the waveforms around your RERAs. I suspect that you will see CA related events surrounding the RERAs. Double check the "good" sections of your sleep data even at the slightly higher pressure. What I suspect you have is mild to moderate Central Apnea which shows up as Hypopneas and periodic breathing in a sleep study (without CPAP). At low pressures on CPAP you still have primarily Hypopneas and periodic breathing. As the pressures increase your Hypopneas are converted to CA events. All of these Central related events, whether those at lower or higher pressure, contribute to poor sleep quality. I suspect you spend very little time in REM sleep. You could get a new sleep study but it won't do you any good if the same people score it. See what your present Dr says but if he wants to keep you on the same machine you will essentially be untreated. Hypopneas and periodic breathing are probably better health wise than full blown CAs. Find that sweet spot and you will minimize your CAs. You will have traded CAs for Hypopneas and periodic breathing. The RERAs will also be scored at lower pressures. While the Clear Airway (Central Apnea) events are machine induced, you already have the precursors of those events without any CPAP. Your sleep quality indicates that you are not symptom free and therefore the underlying condition (Central Sleep Apnea) needs treatment. If your present Dr is unable or unwilling to switch you to an ASV machine, you are going to have several choices. First is find another Doctor. As I mentioned previously, I found mine at my local Teaching University Hospital. You will need to make sure that the new Doc understands Central Apnea not associated with heart disease. Your other choice is to keep using CPAP which does not treat Central Apnea or go without treatment. It would actually take a sleep study while both on and off CPAP to tell which is better. Your AHI is only part of the picture when it comes to sleep quality. Good luck with your appointment.

Rich
P.S. I printed out portions of my flow charts to show my new Doc what was going on.

Apnea Board Member RobySue has posted a Beginners Guide to Sleepyhead Software here:  http://www.apneaboard.com/wiki/index.php...SleepyHead

Download Sleepyhead
Organize your Sleepyhead Charts
Post from Imgur


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#95
Casey, I think you need to get back to your roots. Your sleep study results in the quote below, and initial results, also shown below were a total fail and point to complex apnea right from the start. You have overcome that through your own research and effort, and using low pressures, have obtained a clinically acceptable AHI. It's not perfect, but, well done! With your current results, I think you can argue that your problem is actually not simple obstructive apnea, but a complex apnea that was originally worse with CPAP.

You are not going to succeed in arguing that ASV is medically necessary for insurance purposes, or even advisable with your current results. ASV has its own set of issues, and is very expensive. I think you just need to embrace your success, and make the doctor aware that you may need a different solution in the future. Their diagnostic should reflect the real problem, not conventional OSA. If you accomplish that, consider this a win. You have benefited from auto CPAP as optimized by you. Read your first post in this thread. If you can persuade a doctor to change your prescription, and have insurance pay for it, I'll eat my machine. It won't happen. However, you can at least get the record to show a correct diagnosis and adjust the prescription to what you have found works best.

(11-30-2016, 08:34 AM)caseyfontneau Wrote: Just got my sleep study faxed over. Quite brief, but here is what it says...

Patient was studied with HST device to evaluate complaints of excessive daytime sleepiness, snoring and witnessed apneas.

Total recording was 650 minutes.
Snoring was present/absent.

Respiratory analysis demonstrated 5 obstructed apneas and 6 mixed apneas with a total of 16 apneas at an index of 1.5. There were 103 hypopneas with an apnea/hypopnea index of 11.0. The lowest desaturation was 86 with 39 minutes of desaturation between 50% and 90%

Minimum Pulse 55
Maximum Pulse 107
Average Pulse 80

Diagnostic Impression:
This study shows Mid Obstuctive Sleep Apnea Syndrome (327.23) with mild hypoxia.
-----------------------------------------------------

Anyways that's it. What are y'alls thoughts?

[Image: attachment.php?aid=3022]
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#96
(12-12-2016, 08:26 PM)richb Wrote: Casey, Look at the waveforms around your RERAs. I suspect that you will see CA related events surrounding the RERAs. Double check the "good" sections of your sleep data even at the slightly higher pressure. What I suspect you have is mild to moderate Central Apnea which shows up as Hypopneas and periodic breathing in a sleep study (without CPAP). At low pressures on CPAP you still have primarily Hypopneas and periodic breathing. As the pressures increase your Hypopneas are converted to CA events. All of these Central related events, whether those at lower or higher pressure, contribute to poor sleep quality. I suspect you spend very little time in REM sleep. You could get a new sleep study but it won't do you any good if the same people score it. See what your present Dr says but if he wants to keep you on the same machine you will essentially be untreated. Hypopneas and periodic breathing are probably better health wise than full blown CAs. Find that sweet spot and you will minimize your CAs. You will have traded CAs for Hypopneas and periodic breathing. The RERAs will also be scored at lower pressures. While the Clear Airway (Central Apnea) events are machine induced, you already have the precursors of those events without any CPAP. Your sleep quality indicates that you are not symptom free and therefore the underlying condition (Central Sleep Apnea) needs treatment. If your present Dr is unable or unwilling to switch you to an ASV machine, you are going to have several choices. First is find another Doctor. As I mentioned previously, I found mine at my local Teaching University Hospital. You will need to make sure that the new Doc understands Central Apnea not associated with heart disease. Your other choice is to keep using CPAP which does not treat Central Apnea or go without treatment. It would actually take a sleep study while both on and off CPAP to tell which is better. Your AHI is only part of the picture when it comes to sleep quality. Good luck with your appointment.

Rich
P.S. I printed out portions of my flow charts to show my new Doc what was going on.

Rich,

I've provided 6 zoomed in 5 min areas of interest of 4 separate days. The 28th and 29th (before I touched any settings) and the 7th and 8th (the best results I've reached via 7.0CM). You'll see 3 shots zoomed in on RERA events and 3 zoomed in on areas I didn't have any detected events that look like I had issues anyways. I'm definitely seeing a pattern of RERAs and Hypopneas even during times of no detected events.

28th:
http://imgur.com/uhz7p8c
http://imgur.com/dBchTWe
http://imgur.com/O4b11Mz
http://imgur.com/pwYnLg6
http://imgur.com/w0qXDsJ
http://imgur.com/u7aKQyZ

29th:
http://imgur.com/pydFiHI
http://imgur.com/B3j1euF
http://imgur.com/bWrxvVa
http://imgur.com/K7hICOp
http://imgur.com/yX8xyyX
http://imgur.com/2oZhTvR

7th:
http://imgur.com/oG74AbW
http://imgur.com/DlhO7DI
http://imgur.com/kZurRWF
http://imgur.com/ad70Ocv
http://imgur.com/Gc52M1c
http://imgur.com/4OwMk1l

8th:
http://imgur.com/WGjXMzq
http://imgur.com/f7aXmAF
http://imgur.com/xbwGXvc
http://imgur.com/ELfzPQX
http://imgur.com/QgmDVtS
http://imgur.com/Q21OpbX

Yeah it's a lot haha.

Thanks!
~Casey
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#97
(12-12-2016, 08:50 PM)Sleeprider Wrote: Casey, I think you need to get back to your roots. Your sleep study results in the quote below, and initial results, also shown below were a total fail and point to complex apnea right from the start. You have overcome that through your own research and effort, and using low pressures, have obtained a clinically acceptable AHI. It's not perfect, but, well done! With your current results, I think you can argue that your problem is actually not simple obstructive apnea, but a complex apnea that was originally worse with CPAP.

You are not going to succeed in arguing that ASV is medically necessary for insurance purposes, or even advisable with your current results. ASV has its own set of issues, and is very expensive. I think you just need to embrace your success, and make the doctor aware that you may need a different solution in the future. Their diagnostic should reflect the real problem, not conventional OSA. If you accomplish that, consider this a win. You have benefited from auto CPAP as optimized by you. Read your first post in this thread. If you can persuade a doctor to change your prescription, and have insurance pay for it, I'll eat my machine. It won't happen. However, you can at least get the record to show a correct diagnosis and adjust the prescription to what you have found works best.

SR,

That's a very good point as well. It may be best for me to wait until I can switch back to a medical plan that would cover the ASV and/or additional sleep titrations. I'll say my bare minimum goal will be correct diagnosis and go from there, but I gotta tell ya... I'd love to be a fly on the wall when you eat your machine. Haha.

Thanks!
~Casey
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#98
I'm pretty sure I won't be eating plastic. You have my best wishes, but if you get a $5K machine approved for reimbursement, when you demonstrate a 2-AHI and no O2 issues, you are a smoking good salesman.
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#99
You're probably right lol. Either way it's been a journey and I'm super thankful to have apnea board on my side!
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Maybe, like SR says you should bring in your AHI 10 chart and play dumb. One way or another you are going to need an ASV machine because as you could see you aren't getting much quality sleep. Thanks for posting those snippets. Pretty much as I suspected.

Rich
Apnea Board Member RobySue has posted a Beginners Guide to Sleepyhead Software here:  http://www.apneaboard.com/wiki/index.php...SleepyHead

Download Sleepyhead
Organize your Sleepyhead Charts
Post from Imgur


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