Back to the Land of the Lost

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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dwrek
Posts: 27
Joined: Thu Jan 03, 2013 9:24 am

Back to the Land of the Lost

Post by dwrek » Fri Jul 25, 2014 1:34 pm

So - what happens when you follow the doctor's orders and your AHI improves? You wind up in the Land of the Lost. I went from 36 events/hr. to 7 and my longest event down from 2.5 minutes to 20 seconds according to my last sleep study after a year and half on the BiPap and losing 40 pounds. Great right? Maybe...
I was noticing that my AHI was becoming erratic, with no changes to anything and no pattern I could discern. I used to average between .8 to 1.4 regularly. Was shocked to even see a 0.0 night recently, but followed by a 2.4. Also, I have noticed waking up some mornings pretty groggy and dragging on through the day like the old days. So, I decided to mention to my sleep doc on my follow up and he said with my weight loss and irregular readings a new study was in order.
But during my study, I woke up at 1:30am and wondered why the tech was late with waking me up for the titration so I went back to sleep thinking I was just dreaming the time. Come to find out that as I have lost weight my airway has opened up - good, but because my AHI was now considered mild, the new study "rules" say that I don't get the second half of the study on the mask again.
Huh?
Actually, my sleep tech and doc explained to me that I would be better off had my AHI stayed a litter higher as they could have performed the full titration study on me. And, the sleep tech said I may not need BiPap anymore with my lower pressure I had adjusted down to.
OK....

-So, doc, I should just get a dental device?
-No
-So, I don't need my BiPap anymore?
-No, you still should use it.
-So, I get a second study so you can adjust my settings to what they should be now?
-No insurance won't pay for that as you have mild apnea now.
-Huh? You should have just put me on the titration again.
-Well, we can't do that because of the new study rules (somehow also enforced by insurance pressures which of course when I called to confirm they just quoted me me some ambiguous guidelines which says ultimately they have the power to deny).
-So, what should I do with my machine since we can't trust the settings now?
-Well, according to the evidence the therapy is working even though you don't feel as good as you did a few months ago. If you start feeling worse, call us and we can try to arrange for different settings for your DME to set for you and see if it helps.
-Oh, and you could schedule a titration but you will probably pay out of pocket...

With this kind of logic it would be easier just to gain the weight back so my settings work
Anyone else been through this?

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Nick Danger
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Joined: Mon Jun 09, 2014 3:13 pm

Re: Back to the Land of the Lost

Post by Nick Danger » Fri Jul 25, 2014 2:34 pm

Wow, talk about Catch 22! It's a shame you don't have an autoset version of the S9 VPAP. Is there any chance you could rent one for a week or two? It could help you re-titrate. What about an in-home titration? That would be much less expensive than a sleep lab. Used versions of the S9 VPAP Auto run in the neighborhood of $1200 - the S8 version runs around $700 (prices from secondwindcpap.com).

BTW, 2.4 AHI is still considered successful treatment.

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palerider
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Location: Dallas(ish).

Re: Back to the Land of the Lost

Post by palerider » Fri Jul 25, 2014 2:44 pm

Nick Danger wrote: Used versions of the S9 VPAP Auto run in the neighborhood of $1200 - the S8 version runs around $700 (prices from secondwindcpap.com).
keep an eye out on craigslist, I picked up a vpap auto with about 50 hours on it last week for 450$

also, what mode are you running your ST in, and what're it's settings?

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

sleepy1235
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Re: Back to the Land of the Lost

Post by sleepy1235 » Sat Jul 26, 2014 7:49 am

Get another doctor.

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dwrek
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Re: Back to the Land of the Lost

Post by dwrek » Tue Aug 05, 2014 8:28 am

Thanks for the advice everyone.

In step with my airway opening up my aerophagia increased so I lowered the pressures gradually over a few months. I still wake up sometimes with a lot of pain (all trapped air). Running in ST mode, IPAP 12.6, EPAP 8.6, Rate 12, Rise 300, trigger Med. My wife says I snore sometimes with my mask on now, mildly, which never happened at the higher pressures.

From what I have been reading it sounds like auto is my next move. I'll keep an eye out. Need to see if the insurance will let me pick up a second machine or at least let it count towards my OOP deductible.

Also going to get my second septoplasty with a new doc as my right nasal airway is about 70 percent closed off (again).

Thanks as usual for all the advice and support.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Resmed S9 VPAP ST