Thanks from a newbie.

I just wanted to stop lurking long enough to say thank you to all of you for your excellent advice and feedback. I have been in forum communities in the past, but never one so important. I am almost fifty (next week), with a history of snoring, allergies and asthma. I have done pretty well during daytime hours until steady weight gain reached a tipping point (those last 30 pounds in a year) resulting in extreme fatigue and snoring that was ruining my wife’s sleep and general happiness. With a big push to the doctor (and out the bedroom door!), I finally had a sleep study.

I was diagnosed with complex apnea with an AHI of 92 and oxygen saturation dripping as low as 73%. Obviously this is a problem that has been building for most of my adult life, contributing to all the syptoms of metabolic syndrome. My doctor thought with my private insurance plan he could confidently refer me to the most expensive DME (I know, they are all expensive), but my insurance would cover 80% of the cost only after I met my high yearly deductible, so I would bear most of the cost. My wife did an internet search and found the machine, as most of you know, for savings of almost $1000! I am halfway through my third week on auto bi-pap, and owe a lot of my success to this forum. I have had consistent use since my first night and have seen AHI’s under 5. I learned from this forum how to reset my stats every day to accurately track my numbers and have done so for over the last week, allowing me to try different solutions. But last night was my first night of uninterrupted sleep, and it feels great.

I am no longer a mask virgin. In fact I ordered two different masks initially to find a style that works for me. As a mouth breather I thought the F&P Oracle oral mask would be the most comfortable, but it dried my mouth excessively to the point of being unbearable. The F&P Opus nasal pillow mask was the most effective interface (after getting used to the nare irritation), but the stiff side supports running along my cheekbones prevented side-sleeping, awakening me with nostril leaks. I ordered a ComfortLite 2 with pillows, direct seal, and simple mask. Using the different interfaces confirmed that the nasal pillows worked best for me, and the rigidity of the setup seemed to guarantee a leakless night. Unfortunately (that famous mask mantra), any pulling from the hose moved the forehead anchor, and the rigidity of the relationship between the parts caused everything to move, including the nasal pillows. I also experienced mouth leaks for the first time with this mask, but I found my mouth guard for teeth grinding prevented those (to think I had stopped using that because it was uncomfortable!). After a few trials, I have perfected my homemade adaptation using the Opus’ tube and nasal pillows connected to my mouth guard (similar to the Cpap Pro -http://cpappro.com) and an elastic cloth headband from my wife (with the Opus’ spare tube anchoring strap) to route the hose over my head and maintain upward pressure on the nasal pillows. The key was flexibility between the mouth guard and the nasal pillows, allowing all kinds of movement and easy side sleeping. Practically no leakage and zero annoying awakenings! And the mouth guard solves two problems at once, mouth leaks and teeth grinding.

I am already experiencing “flow tilt” (lol), as the pressure now seems negligible and I have to check the vent to make sure the thing is on. I also do not need to ramp the pressure while falling asleep, which now happens in the same amount of time before xpap (about 15 minutes). My 90% pressure numbers continue to fluctuate (from a low of 12/9 to as high as 16.5/14) and my AHI’s have not yet stabilized (low 4/high 12), but I think that with consistent use of my custom mask I will be able to maintain AHI’s under 5. Maybe by the end of the year fulfilling my insurance deductible will coincide with a price drop of the Bipap Auto SV (https://www.cpap.com/productpage-advanced.php?PNum=2471) for us complex apnea sufferers.

Thanks for this forum and for tolerating my long winded (or just winded) way of expressing my gratitude to everyone here, from newbies to old hands. I have learned something from each and every one of you, and you should all give thanks and be proud of the community you have created here.

Denny

Denny, what a great post! And good for you (and your wife who is helping you) for taking up the reins of your own treatment so well.

You've got a great machine, in the BiPAP Auto.

I'm curious about what showed up in your sleep study that makes you think you might have Complex Sleep Disordered Breathing (CSDB or CompSAS) as opposed to "regular" OSA? Or that you might need an Adaptive Servo Ventilation machine...an ASV machine?

If it was that you had some "mixed" apneas or some centrals showing up in your sleep study, neither of those things in and of themselves are an indication of having CompSAS or of needing an ASV machine.

Gonna send you a PM. Please check for it with the Private Messages button at top upper right of this page.

Again, congrats on getting yourself on "cpap" and becoming a seasoned Lab Rat already with your mask modifications! Hope you will post a picture soon of your mask fix. Could help others get an idea of how to make their own mask work better if they're having problems. And who of us doesn't have mask problems at first!?

As RG said congrats on the good results. I have been using Cpap for 2 years now. I finally got a Bipap Auto and I feel as different as night and day.

I had a high setting 20cm and straight x-pap treatment sucks with that high of a pressure.
So last year I purchased a Pro-2 w/C-flex. It helped but it (the machine) took a dump on me. I had to go back to the first machine I got from Apria Ripoff. All the problems I had came back.
I went to the doctor and he wrote me a new script' for a Bipap Auto .
I have been using it for 5 days now and there is a noticable change in how I have been sleeping. I was always only sleeping 4 to 5 hrs a night.

Now I am sleeping 7 to 9 hrs. without getting up out of bed.

Welcome aboard.

As a newbie myself I am excited to see such postive results. Congratulations!!

Ron

I'm curious about what showed up in your sleep study that makes you think you might have Complex Sleep Disordered Breathing (CSDB or CompSAS) as opposed to "regular" OSA? Or that you might need an Adaptive Servo Ventilation machine...an ASV machine?

Thanks for the feedback, Laura. Check for a pm response.

Regarding Complex Sleep Apnea my research says:

"Complex Sleep Apnea has recently been described by researchers as a novel presentation of sleep apnea. Patients with complex sleep apnea exhibit OSA, but upon application of positive airway pressure, the patient exhibits persistent central sleep apnea. This central apnea is most commonly noted while on CPAP therapy, after the obstructive component has been eliminated. This has long been seen in sleep laboratories, and has historically been partially managed either by CPAP or BiLevel therapy. Adaptive servo-ventilation modes of therapy have been successfully used to treat severe complex sleep apnea syndrome."

My sleep study said:

"No clearly effective pressures were achieved with CPAP. At pressures that reduced the obstructive elements of the sleep disordered breathing, central apneas and enhanced transitional respiratory dysrhythmia became manifest."

Seems they are saying the same thing.


Look forward to a picture of my mask mods. I'm hoping that the full night's sleep will become the norm.

I am no longer a mask virgin.

Whoo Hoo! You are sooooo cool! What a great introduction to the Hosehead club!!

Keep posting, you'll be a valuable addition to the forum!!

Take Care,
Cathy

BadBreath wrote:
I ordered a ComfortLite 2 with pillows, direct seal, and simple mask. Using the different interfaces confirmed that the nasal pillows worked best for me, and the rigidity of the setup seemed to guarantee a leakless night. Unfortunately (that famous mask mantra), any pulling from the hose moved the forehead anchor, and the rigidity of the relationship between the parts caused everything to move, including the nasal pillows. I also experienced mouth leaks for the first time with this mask, but I found my mouth guard for teeth grinding prevented those (to think I had stopped using that because it was uncomfortable!). After a few trials, I have perfected my homemade adaptation using the Opus’ tube and nasal pillows connected to my mouth guard (similar to the Cpap Pro -http://cpappro.com) and an elastic cloth headband from my wife (with the Opus’ spare tube anchoring strap) to route the hose over my head and maintain upward pressure on the nasal pillows. The key was flexibility between the mouth guard and the nasal pillows, allowing all kinds of movement and easy side sleeping. Practically no leakage and zero annoying awakenings! And the mouth guard solves two problems at once, mouth leaks and teeth grinding.

Denny

Denny,

I have experienced some of the same mask issues as you and I also use a mouth guard. I agree with Rested Gal that I sure would love to see some photos and detailed description of your lab ratting fixes.

I am so glad to hear of your successes. Good luck to you.

Janna

BadBreath wrote:

I'm curious about what showed up in your sleep study that makes you think you might have Complex Sleep Disordered Breathing (CSDB or CompSAS) as opposed to "regular" OSA? Or that you might need an Adaptive Servo Ventilation machine...an ASV machine?

Thanks for the feedback, Laura. Check for a pm response.

Regarding Complex Sleep Apnea my research says:

"Complex Sleep Apnea has recently been described by researchers as a novel presentation of sleep apnea. Patients with complex sleep apnea exhibit OSA, but upon application of positive airway pressure, the patient exhibits persistent central sleep apnea. This central apnea is most commonly noted while on CPAP therapy, after the obstructive component has been eliminated. This has long been seen in sleep laboratories, and has historically been partially managed either by CPAP or BiLevel therapy. Adaptive servo-ventilation modes of therapy have been successfully used to treat severe complex sleep apnea syndrome."

My sleep study said:

"No clearly effective pressures were achieved with CPAP. At pressures that reduced the obstructive elements of the sleep disordered breathing, central apneas and enhanced transitional respiratory dysrhythmia became manifest."

Seems they are saying the same thing.


Look forward to a picture of my mask mods. I'm hoping that the full night's sleep will become the norm.

Welcome, Denny!

I look forward to hearing more about your interface experiments!

JEn

Snoredog wrote:sounds like CSDB to me. If I were you, I would:

Very possible. It's also possible (depending on the expertise of the sleep tech handling the titration) that you were having transient centrals that would have gone away if you had been left longer "At pressures that reduced the obstructive elements of the sleep disordered breathing"

Of course, that's just my guess at another possibility. If you could get the graphs from your sleep study (both studies, if it was not a split night) and post them, someone like StillAnotherGuest could shed a lot more light on what was going on or might have been going on during the titration.

Before I started trying out a machine as complicated as an ASV, I'd want to be absolutely sure about what I was trying to treat before I tried to treat it. That's a paraphrase of one of the taglines SAG (StillAnotherGuest) sometimes uses. And it makes a great deal of sense.

An ASV machine is a godsend to those who have a condition that needs that kind of treatment. It could also be the machine from hell for someone who doesn't have the kind of sleep disordered breathing (CompSAS or CSDB -- complex sleep disordered breathing) that it might help with.

I'd start with getting some good input (as from SAG) with whether the results from your sleep study actually does show a clear indication that Complex Sleep Disordered Breathing is a problem for you.

I wouldn't start counting the days of treatment (or the AHI's or pressures used) that you've been getting until you've got all your mask issues and mouth air leak problems resolved. Which, it sounds like you've pretty much handled now.

Now that you've taken care of mask and mouth leak issues, if you start getting rather consistently good AHI's and restful nights of sleep like "last night was my first night of uninterrupted sleep, and it feels great." then you are probably on the right machine for your OSA.

And if your current machine does a good job for you, then the ASV would likely not work as well. I do believe it's kind of an "either-or" thing about whether an ASV as opposed to a conventional cpap, autopap, or bipap is what a person should have. And that's going to be very dependent on exactly "what it is that needs treating." Do get the full report, including graphs, from your study, if you can. That would be up to a dozen pages...not just a one or two page summary.

What settings are you using with your BiPAP Auto, Denny? EPAP is the most important pressure to set "right", imho. Too low and it will allow apneas to sneak in before the machine can prevent them.

tangents wrote:Whoo Hoo! You are sooooo cool! What a great introduction to the Hosehead club!!

Keep posting, you'll be a valuable addition to the forum!!

tangents said it so well!! Again, an enthusiastic welcome to ya, Denny!

Before I started trying out a machine as complicated as an ASV, I'd want to be absolutely sure about what I was trying to treat before I tried to treat it.

As a confirmed techno-geek (I mean, my name is Dennis!) I fully understand the desire to adopt new technology even if it is wrong for me. I will certainly question my sleep doctor (who I think is very good, BTW) on my first "smartcard" visit in two weeks. And a second or third opinion from someone like SAG could only help to allay any lingering doubts.

What settings are you using with your BiPAP Auto, Denny?

My machine is still set to my prescription settings of an IPAP of 20 and an EPAP of 8. So far with a lowest auto EPAP of 9 it may well be correct but it's too soon to tell. I am exited about seeing some stable numbers, which sure beats my initial depression at the thought of being tethered to a machine every night for the rest of my life!

I look forward to hearing more about your interface experiments!

JEn

From my computer support days I always called it "inyerfacing". I guess that is really appropriate now! BTW Jen, your positive support to others and the site of your beautiful smile has been a great comfort these past weeks.

Denny

BadBreath wrote:My machine is still set to my prescription settings of an IPAP of 20 and an EPAP of 8.

That sounds very good for the IPAP/EPAP. Is the Max Press Sup set for 8 ? If not, I'd set the Max Press Sup for as much as it will let you, which will be its max of 8 with those IPAP/EPAP settings.

Welcome and congratulations on your great success so far, Denny!

Your description of using the nightguard and connecting it to the mask is so interesting. It will be great to see how you did that.

It's good to hear that you have a sleep doctor that you trust, too.

From my computer support days I always called it "inyerfacing". I guess that is really appropriate now! BTW Jen, your positive support to others and the site of your beautiful smile has been a great comfort these past weeks.

Denny

You are too sweet! I'm blushing!

BadBreath wrote:
My machine is still set to my prescription settings of an IPAP of 20 and an EPAP of 8.

I am assuming you are using an auto-bipap, just like me (I'd have to push the back button to see, sorry.) I actually found it helpful to shorten up the tether between epap and ipap and to shorten my range. I found I was waking with extreme changes in pressure.

Having a copy of your data is crucial. When i first got my bipap auto I set the range from 10-20 then I got my report and found I was a train-wreck (as snoredog put it) at pressures like 18 and 20, so I pulled it down to a range of 10-17. My titrated pressure is 16/12.

That said, experimentation, (which it sounds like you are more than willing to do!) will get you where you want to go. Just be patient and don't make too many changes at once. And keep your options open. What seems like a crazy idea one day (taping comes to mind) will be a godsend another!

You made my day! What a great b-day present!

jen