10 Years Later...Thank you cpaptalk!

Hi all,

I’ve been lurking on this site for a few months and just wanted to express my appreciation to the community here at cpaptalk for providing such a wealth of support and information on how to live with this serious chronic condition of ours. In particular, I want to thank the Goodmans for making this community possible, and special thanks to Rested Gal for your years of ongoing support and excellent guidance (love those lab rat awards and oh-so-helpful clickable LINKS summaries.)

I was first diagnosed with sleep apnea about 10 years ago. I was provided with a straight CPAP machine, and found CPAP treatment very uncomfortable (I now realize that what I hated most about that machine was trying to breath out against too much pressure; didn't know back then that I what I wanted was called "exhilation relief", and that it was available via a BiPap machine). My guess is that I have been about 10% compliant over the years. Through a combination of sleeping on my side and a cheap oral appliance that advanced my jaw a little, I reduced my snoring significantly and thought (hoped) that this was also helping with my sleep apnea.

Fastforward 10 years. Late last year I finally pushed myself to suffer through another sleep study (overnight), where I was diagnosed with severe sleep apnea (AHI of 99.4; 60% of the time my O2 level was below 90, with a low of 74; zero REM sleep). Sleeping on my side did NOT improve my OSA. Fortunately, the study showed no PLMS arousals, very low (<2/hr) non-specific arousals, and that I respond well to Cpap (AHI dropped to 2 with CPAP pressure of 14; 10% REM sleep).

When I shared this with my brother (another hose-head) and asked for advice on which machine to get, he pointed me to this forum. Thanks, Bro!

Long story short, thanks to the excellent guidance here and the support of my sleep doctor and her staff, I have found the right set-up (for me) and am now 100% compliant.

Getting to this point took a lot of trial and error. I’ve tried 4 different machines, 5 different masks, and tracked my statistics religiously. Being a habitual researcher and lab ratter certainly helped. My guiding principle has been comfort + good data = compliance. My results have most definitely been worth the effort. I now sleep less each night and feel much better all day, with improved focus and no more mid-day drowsiness. My AHI is now consistently less than 1.0 and my O2 level stays above 90.

Here’s my current set-up:
- Respironics BiPap Auto with BiFlex (purchased via cpapauction.com; averaging 13 IPAP, 9 EPAP)
- Lab-ratted ComfortLite2 nasal interface with Direct Seals (decapitated, with Activa swivel inlet tube, and extra pantyhose strap (black, of course)
- Effective hose management (suspended from the wall above my head using a removable 3M Command Adhesive Hook, retractable keychain and scrunchie)
- Invaluable tools: Encore Pro software and Pulse-Oxymeter (loaner).
Note to Rested Gal: Sound familiar?

I’m now experimenting with an oral appliance to complement my BiPap Auto, but that’s a topic for another thread.

Again, thank you all and best wishes with your treatment and in finding the right solution for YOU.

Al

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First, let me say congratulations that things are working out for you. It is a very long road. I am glad that you lurked, read and learned from everyone here. Many people have accomplished the hardest part of OSA by coming here to read, ask, and listen. Me in particular. This board taught me everything that I know about OSA. And I have learned that it really does get better with time....

Al, you found the right place and you're doing the right thing by taking the time to figure it out. Congrats!

BelmontAl wrote:Note to Rested Gal: Sound familiar?

Yeah, kind'a.

WTG, Al !!

Joyce, Danny and Laura,

Thanks much for the kind words and encouragement. It's people like you that make this board so special.

Best,
Al

Al....

Double thumps-UP to you. Obviously, you really wanted and worked hard at getting great therapy. Hose well on every night.

Nodzy

Al, from what I've read, up to half of OSA-diagnosed patients give up on therapy within the first week. Another half of them will have given up by the third year. So you've beaten the odds.

It's a shame because most people (and doctors) focus on the sleep deprivation aspects of apnea, which are bad enough, and give up on therapy because they don't "feel" better right away. What they don't realize is that the effects of desaturation are far worse than sleep deprivation.

Keep at it!

the shame is that Dr's don't take people seriously when they ask for auto pap, cflex , bi pap or some way to breath against the air flow if they have trouble. that is the number one cause of non compliance

neverbetter wrote:the shame is that Dr's don't take people seriously when they ask for auto pap, cflex , bi pap or some way to breath against the air flow if they have trouble. that is the number one cause of non compliance

NB,
Right on. It took me just over 5-years to get something other than a vanilla CPAP. And I discovered that I fully qualified for a BIPAP from the day of the sleep study, and they were supposed to "issue" me one initially.

I only succeeded in persuading them after joining the board, buying my own Auto-APAP and masks.... and embarrassing them with data showing my newfound "above average good therapy." Then they suddenly couldn't provide a BIPAP w/BIFLEX fast enough to cover their Southern brains.

Could it be that they (many of them) enjoy knowing they control someone's misery?

Nodzy