Why doesn't APAP respond to apneas?

dsm wrote:If you don't buy that SV I will - they won't be making that quality of machine for much longer (very expensive to build) but IMHO a regular dream machine - the best therapy device I have ever come across. I'd be depressed if mine broke so a spare is an interesting reality. Other machines can hold the fort against OSA & SA but the Bipap SV goes on the offensive and for me has been a great restorative device.

If it turns out that the BiPAP autoSV machine didn't work out for Bev, then Bev just might be able to sell the machine to DSM.

I can see Doug has already placed a bid---and justifiably so if it's a good machine for him!

DSM,

I'm just getting of work and need time to read through this thread. WHAT??? You want me to bid against you? I thought there was an unwritten code forbidding that

I've been watching for an SV at auction and even bid on one a couple of weeks ago, but didn't win. You are right. They are an expensive experiment. If I weren't so tired, I could take a second job to pay for it

What if any warranties come with a CPAP that you buy at an auction? Will Respironics deal with the end user if we have a problem with the machine?

Bev

OutaSync wrote:DSM,

I'm just getting of work and need time to read through this thread. WHAT??? You want me to bid against you? I thought there was an unwritten code forbidding that

I've been watching for an SV at auction and even bid on one a couple of weeks ago, but didn't win. You are right. They are an expensive experiment. If I weren't so tired, I could take a second job to pay for it

What if any warranties come with a CPAP that you buy at an auction? Will Respironics deal with the end user if we have a problem with the machine?

Bev

Bev,

I took an educated guess that the price would be just over 2000 & was willing to bid to 1500 to prove it. With the Aussie $ having gone into freefall since the big bang - I won't be bidding more on the unit but I was at least able to give you a guideline as to the reserve price

I believe the warranty is valid but you may need to find out the original seller as some companies (am not sure about Resp in the US) will only deal with the original seller. Here in Aust I took a machine I bought (Bipap Pro II) to the local agent & they didn't argue re sending it back in for repair but that machine was out of the warranty period anyway.

Good luck

DSM

So, just to be clear, if I am having centrals, would the SV kick in and breathe for me, before my oxygen levels drop so low?

OutaSync wrote:So, just to be clear, if I am having centrals, would the SV kick in and breathe for me, before my oxygen levels drop so low?

That's a fairly good high-level summary of what it attempts to do, Bev.

Take one of your isolated or unaccompanied 34 second apneas, for instance. The RemStar Auto algorithm simply will not and does not attempt to treat it by design. Any BiLevel with a backup (not just the ASV machines) will kick in right away with that timed backup. If your backup is set at 15 BPM, for instance, your 34 second apnea gets a burst of IPAP air after a couple seconds.

Aside from employing that typical BiLevel style backup, ASV will also endeavor to quickly and dynamically manage an appropriate IPAP level for each breath. It will attempt to do that based on peak-flow targeting in the Respironics ASV case. The peak-flow targeting is recent-average derived from a moving window. So not only would your 34 second apnea get a burst of IPAP after only a couple seconds, but the peak level of IPAP may get adjusted on-the-fly as well during each breath. That's pretty darn dynamic and pretty darn responsive compared to what's happening right now with those isolated or unaccompanied apneas of fairly long duration.

Regardless, there are never any guarantees that all that ASV magic is going to be right for you. But then there's always ordinary BiLevel modality to try, with or without BiFlex---and that modality will also try to back up a missing breath after only a couple/few seconds (instead of leaving it untreated for 34 seconds----if that apnea does not meet the "2X" or "cluster" criterion).

OutaSync wrote:So, just to be clear, if I am having centrals, would the SV kick in and breathe for me, before my oxygen levels drop so low?

Personally, it is my opinion that you wouldn't improve any with that more expensive machine. IF you look at your AHI it is already at 1.4 and 2.0 and made up mainly of Obstructive Apnea. ANY AHI that is being reported on your Encore report would INCLUDE any central or mixed apnea counts.

Because it takes 14 cm pressure or more to eliminate those obstructive apnea, that means that you would have to set the Auto SV at EPAP=14. That pressure is static so you would end up with same result as current Aflex with the Minimum set to same 14 cm. Next, IPAP on the Auto SV would not have anything to respond to as you don't appear to have any Hypopnea, meaning IPAP would sit at the IPAP minimum setting.

Much of the pressure "pulses" you see on your Encore reports is the Remstar probing for events, it does that to search for optimal therapy.

Your Central Apnea are not that many while at 12/8 it is your more pronounced disorder but that quickly fades as pressure increases. While the SV would manipulate your volume to keep breathing stable, that doesn't appear to be your problem, I doubt the backup mode would ever come into play.

For some patients bi-level therapy for Central apnea can even make things worse. So at this point, if you are okay with tolerating the pressure, I would see a GI specialist and discuss your leaky LES. If you can get that guy to seal up your aerophagia would be eliminated. They can do a simple endoscopy with laser and repair or rebuild your LES, it is a routine procedure. They can also give you something to allow it to heal. If you have insurance it is most likely all covered.

By all means if you can, trial a Bipap or Auto SV but that is only going to work if they set it up perfectly for you right out of the box. Get it set up by some DME that has never seen one before and you may end up with yours on the auction block also.

There is no doubt the SV machine is a good machine but weather it helps you or not is another question. There are a lot of people who could possibly benefit from use of an Auto SV, but there are just as many who do just as well on a standard CPAP. Your doctor probably sees that AHI=2 or less and not much activity on the report and thinks the same. If your Encore report looked like that Bi-level titration then I would say Auto SV would be a good way to go. But you are pretty stable on the Aflex, there is only a handful of residual events.

Wow! I think I actually understood that! I have to tell you, SWS, that you often go waaaaay over my head. I've lost too many brain cells to keep up with most of what you write. (Is it just me? ) You guys must have gotten diagnosed while you were still young.

So, you all will help me get set up when I get a new machine? And don't worry, I understand that there are no guarantees. I've come too far to quit now. A year ago, I had nights where I wasn't breathing for 40 minutes.

You all are fantastic. You may have saved another life, here.


Bev

Snoredog,
I wrote the above before I read your post. Now I'm confused again. I did go to a GI specialist and had an endoscopy. He would not recommend surgery and didn't seem to understand (or know) how a weak LES affected my affected me as far as the air going down was concerned. He was more concerned about the acid coming up when I lie down. The aerophagia is not my biggest concern right now. Bothersome and sometimes painful, but not as scarey as not breathing. I'm barely making it through the day, afraid to drive long distances, and losing my memory and my sex life. Don't I owe it to myself (and those who have to put up with me) to go for it?

Bev

OutaSync wrote:I can't sleep on my stomach because it hurts to turn my neck! It hurts to sleep on my side, as well (especially since my shoulder surgery), but I can't stay on my back all night because of my back pain. I guess I do toss back and forth a lot. Each time I change positions I get about 10 seconds of relief before the pain comes back.

ozij wrote:And I would also consider the possibilty that all that painful tossind and turning is disrupting your sleep.

I'm thinking more along the lines of "probability" or "virtual certainty".

OutaSync wrote:For sure the pain doesn't help me sleep, but the pain medication makes me stop breathing way more, so I don't take it. I don't want to get addicted to it anyway.

The BiPAP autoSV just may help with the "stop breathing" part. I don't blame you one bit for not wanting to get addicted to the pain medication. If there's anything at all you can do to address that pain, I think your sleep stands a great chance of improving.

OutaSync wrote:I have to tell you, SWS, that you often go waaaaay over my head. I've lost too many brain cells to keep up with most of what you write. (Is it just me? )

That's my repeated shortcoming, Bev. Sorry.

OutaSync wrote:So, you all will help me get set up when I get a new machine? And don't worry, I understand that there are no guarantees. I've come too far to quit now. A year ago, I had nights where I wasn't breathing for 40 minutes.

Well, you already got your doctor's approval when he wrote the ASV script for you a while back. That satisfies my criteria. I'm sure DSM, Snoredog, and others will pitch in.

I got the Dr's prescription, not his approval. (I wouldn't leave until he wrote it ). Because he would not even consider that I might need something more than an Auto, he has made it impossible for my insurance to cover it. So now I have to pay for it myself.

Bev

-SWS wrote:

OutaSync wrote:I have to tell you, SWS, that you often go waaaaay over my head. . . .

That's my repeated shortcoming, Bev. Sorry.

The great thing about about -SWS' posts is that whenever I take the time to look up the words and then meditate on the points he makes, I'm never disappointed, even if it takes several readings. Time well spent.

In all, I don't think any of us would really want it any other way, -SWS.

Well, there are some darn good sleep doctors out there IMHO. Wonder if you could find a good one working the search equation backwards: call Respironics or a high-volume DME---and then ask them which doctors work with the new ASV technology. Then you might have that doctor evaluate your entire sleep/wake and health profile. Just a thought!

Wish you could manage to get that pain squared away. I know first hand that's a huge sleep and daytime energy problem. Not a lot they can do for my trigeminal neuralgia flareups short of stupor-inducing medications or brain surgery. Needless to say I have also opted to live with the pain so far.

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Thanks for giving me a pass, jnk!

It's so wonderful to be able to come to a place where people understand. Thanks to all for your suggestions, encouragment and taking the time to help those of us who are still struggling.

Bev

-SWS wrote: ...Not a lot they can do for my trigeminal neuralgia flareups short of stupor-inducing medications or brain surgery. Needless to say I have also opted to live with the pain so far.

you mean you haven't tried self-surgery yet?

I guess it would be pretty hard doing that in a mirror, my eyesight is so bad, what about Dr. Franks pain spray??

...you spray it in your dog's water dish and it works like a charm so they say

http://www.infomercialratings.com/produ ... ray_review

Bev, I really look forward to seeing how things go for you.

-SWS, I wish something like a low dose of Trileptal could do the trick for you. Sorry, man.