Newbie looking for guidance...

[KSMatthew]

There are a couple of different settings to consider: therapy and comfort. Your doc and sleep studies can determine a "best" therapy. I put "best" in quotes because it's a starting point based on one test, your data and charts from your CPAP can be used to get closer to to the setting that's most helpful. Comfort settings are really left to you and what you feel works best. Your machine allows you to change those without getting into any hidden clinician menu.

[Sleeprider]

Insopita, you asked earlier for information on why a bilevel therapy would be better, and more specifically, you need to understand why therapy with EPR is working for you. I think we have established that you have a low rate of apnea, but very prominent flow limitations. These are common features of upper airway resistance syndrome (UARS). The complication of aerophagia, means that keeping pressure low, particularly during exhale is important for your comfort. You know you are treated best when you use bilevel pressure of 7.0/4.0 (pressure of 7.0 with EPR 3) and allow limited automatic adjustment of pressure. This wiki article explains the rationale behind using pressure support (the difference between IPAP-EPAP) is better for UARS than brute force single pressure. http://www.apneaboard.com/wiki/index.php...ome_(UARS)

Take a look at the article, and if you want to learn more about flow limitation, also read this: http://www.apneaboard.com/wiki/index.php...Limitation Your doctor is unfortunately the type that wishes to control and direct your therapy, and has a narrow view of what the therapy potential is. He relies on pressure, without understanding the additional tools available by also using pressure support or EPR. I think you will have good success and comfort with CPAP therapy, but you really need to find a doctor that you are comfortable with that listens to your input and uses that to adapt the therapy to your needs. This guy sounds like a lout.

[Insopita]

Oh my goodness, your common sense is SO encouraging!  Yes, I can see a gulf between what therapy demands and what comfort allows.  I'm looking forward to reading the links provided.

I can easily envision myself on the track Sheepless took ... experiment with this until things resolve.

I'm embarrassed to post last night's chart.  Slow going to sleep, then after a break, fell asleep before getting it back on!  And it looks like it was leaking freely...

[attachment=12294]

[sheepless]

Insopita, I think I've been better served by AB than the sleep med establishment, but a couple comments:

of course I can't know how things would have turned out had I stuck with the sleep doc, but: he seemed quite pleased with my long term apap ahi of 5-6 even though I complained about not feeling any better. as often as I asked about waiting to buy the apap machine because I might need an asv, he said no buy the apap (he wasn't even selling it to me). combined with my low-ish ahi, I doubt I would have been supported by insurance in my move to asv. but again, who knows? besides, my deductible is so high I'm paying out of pocket anyway. whatever, it's possible staying in the 'system' would have worked out, IDK. I have to believe the doc knows a lot more about this than me...

meanwhile, I think I'm an extreme example but I've been cpap-ing for about 2.5 years and it's only in the last few months that I believe I'm experiencing noticeable improvement in how I feel. I've spent the better part of a year self titrating the asv. it can take a lot of experimentation. usually though, AB member assistance can expedite that.

eventually I'll have to get back into the system to ask/beg for an rx for a new asv since the rx I have calls for apap.

insurance probably won't cover it.

best of luck however you proceed. there are many things we need the doc for but fine tuning the equipment isn't necessarily one of them for many/most of us.

[Sleeprider]

I think it is fair to say Sheepless is not a typical ASV user, and has been a difficult nut to crack in terms of therapy. His events don't clearly point to central apnea as a central feature, and therapy is as fragmented as any I have ever encountered with many short therapy sessions and therapy breaks through any give day or night. ASV was not an obvious choice. It was his choice to acquire ASV without a prescription, and we worked to optimize it, and as a result, it allowed better rest than machines without backup. He was very resistant to using positional therapy (soft cervical collar) when that appeared to be a key to successful therapy. Over time he has found what works for himself, and I think Apnea Board members have been encouraging and persistent in nudging Sheepless towards better results. Everyone has their own unique experience and response to therapy, and sometimes everything works as expected, while in other cases, a lot of trial and error is involved. I would put Sheepless in the trial and error group.

It will be difficult for him to have ASV approved by insurance, because his diagnosis does not include the very limited diagnoses that qualify for the therapy, but for him it works better, and gives him a better quality of life. I think Sheepless is a valuable member on Apnea Board because he has worked through very difficult issues to find what works, and he freely shares that experience. Ultimately that is why we're here. To offer our experiences and help to coach you through your own journey and obstacles you encounter; however, we are all individuals and what works for one of us, does not always work for all of us. Like Sheepless, try new things, and go with what works for you.

[sheepless]

Sleeprider: visualize me looking down shyly, rocking from foot to foot, while I say "awww, shucks". thanks for making my day! (payment is in the mail.) it's good to be a member and nice to be thought of as a valuable member.

Insopita: ditto Sleeprider: "...try new things and go with what works for you." to which I'd add: keep being your own strong advocate. there are pros and cons to everything. thoughtful and systematic trial and error is the name of the game, whether your doc does it or you do. whatever direction you choose, it's my experience that AB members will be here to help you figure it out.

[Insopita]

What is ASV?  Haven't been able to find it out.

Another thing I've been wondering, would shedding maybe 10 pounds cure/ease the situation?

Oh, I truly hope you all keep nudging me along!   It'll be nice if there's remarkable progress ere two years slink by.  I'm trying to do what Bonjour suggested, but need to up the pressure a notch.

Yeah, I should find a more amiable sleep center.  This annoying one is about 35 miles north.  I can head south maybe 40 miles to locate another one.  Well, tomorrow is another day (per Scarlett O'Hara).

Sheepless is valuable simply for his very creative name!  I grin every time I see it.

[SuperSleeper]

About ASV [from the Apnea Board Wiki]:

http://www.apneaboard.com/wiki/index.php...tion_(ASV)

[sheepless]

guess we blew right by you on that one. sorry about that! keep asking questions and let's get back to focusing on you in this thread.

[trish6hundred]

Hi insopita,
WELCOME! to the forum.!
Good luck with your CPAP therapy.
Don't be antimadated by the controll freak at the sleep lab.
Learn as much as you can about setting up your machine. so YOU can be the boss and take charge of your own therapy and be nobody's fool.
Your sleep doc needs to lighten up a bit. Its not Fort Knox, its just a CPAP machine.