New ASV User Needs Advice on Machines

I've been on APAP for over 6 years now. Haven't been on the forum for a while, but I learned a lot here. Seems there are a lot of new names now.

I did pretty well until the last year. I thought maybe my unit just needed to be replaced, but my sleep study showed I now have central sleep apnea, along with the OSA. My study showed a central AI of 15, with a HI of 42. Looks like I will probably be going with a new ASV unit soon. I will be having a titration on the 12th.

My doctor is mostly familiar with the Respironics units, but I have been really happy with my Resmed S8 until the last year, and obviously it couldn't have done much to treat the central apneas. I have a couple of issues, wonder if anyone has any thoughts.

1. I am HIGHLY reactive to inhaled chemicals. I have a disease called mastocytosis, where the mast cells overreact when exposed to all kinds of things, and cause inflammation, swelling, and potential anaphylaxis. A new machine is going to be a problem for a while, as the plastics in it will be off gassing. When I bought my first machine, the Resmed had much less chemical odor than the Respironics. Does anyone know if this is still true? Also, the Respironics was known for having trouble with musty odors in the sound dampening sponge in the machine. Is this still an issue? I really need to figure this out as much as possible, or I may end up not tolerating the machine.

2. I am guessing I am having centrals due to opiod use for chronic pain, but I also take a lot of antihistamines and other meds for the mastocytosis that can also be sedating. My heart was just looked at, and it is fine. I had some centrals in my original sleep study six years ago, but not enough that anybody worried about it. Not sure when things got so much worse, but I have had a difficult year in 2014, health wise.

3. Is there any specific reason why I would need one brand of machine or the other, as far as treatment goes? As I said, I have done well on the S8 at a pressure of 9-15, until things fell apart last year. Lately I tried swapping out for a friend's S9, at a pressure of 9-15. Either the algorithm in the S9 is even better for me, or the S8 really was failing, as my AHI went back down to mostly 2-4, with occasional nights that were worse, mostly because of centrals. On the S8, I had been having some nights with an AHI of 40 and above. Of course with the S8, I have no idea how many were centrals, but I was having a lot of hypopneas, which were pretty much wiped out on the S9. I usually figure I like to stick with what I know, as long as it works, and so far, Resmed has worked, doing what it was supposed to do.

3. Any difference in the noise they make? When I got my APAP, it was much quieter that anything else. Has that changed? Will the ASV units both be quiet (or not?)

4. I have been seeing my pressure sitting mostly between 10-13, with EPR set at 1. I don't use the ramp, and barely notice the pressure, or the pressure changes. I know the ASV is different, but I am hoping the pressure needs will not be problematic for me.

5. I'm not afraid to tweak my settings, though I'll need to learn about the new units. My old sleep doctor gave me permissions after seeing that I knew what I was doing. Now I have a new doc, so I am hoping she will also be open, and not require me to get every move approved.

I would go strictly with the docs orders if I thought they had a reason to prescribe the Respironics, but I know for a fact they don't, except for being more familiar with it. I would rather have the unit that will work best for me, in all the ways I need it to. Thanks for any info you have to offer!

I would make your preference known. I don't think the machines are therapeutically much different in efficacy, but the machines do have subtle different feel and intervene a bit differently in initiating a breath. The treatment of opioid central apnea is a well known use of ASV, and the brand is not very important. That said, the people here that have used them are very happy with the Resmed "feel".

Paging Pugsy and other ASV users.

While I have experience with multiple Respironics machines that doesn't include their ASV model...which now is model 960 as being the latest and greatest.
I do have experience with the S9 VPAP Adapt which is comparable to the Respironics 960.
The S9 VPAP Adapt is not the latest in ResMed machines...there's the newly released model called AirCurve ASV I think.
From what I have heard the Aircurve isn't different in how it does its job from the S9 other than how it looks and the foot print on your night table.

If you have a S8 and your past experience with Respironics was back when the S8 was the latest and greatest then there really is no comparison between those Respironics models (M series and the older Legacy series).

In terms of therapy both brands of ASV machines do a great job but they go about things just a little bit differently.
The Respironics 960 has more settings options that can be customized or tweaked than the Resmed. I like to think of the ResMed as a more plug and play type of machine with very few settings available that might need tweaking. The machine sort of takes over more. That can be both good and bad depending on what a person might need. Someone might need the "gentler" tweakable settings of the Respironics...or they might do better with letting the machine dictate things.

Ideally a person needing ASV would have the opportunity to actually trial both brands to see which one they like the best but the cost of these machines makes it difficult for a DME to offer the luxury of a trial...but I would still ask because if we don't ask the answer is always no with no possibility of a yes answer.

I love my S9 Adapt...had no issues at all letting it do the driving...slept quite well with it from day one.
I have wanted to try a 960 just to compare but these machines are pricey and hard to find even on the secondary market where I have to get these machines so I haven't been able to actually compare.
Would I do just as well with the 960..most likely but I can't say with certainty.

It sounds like you are really concerned about the Respironics brand and that may cloud your experience with a 960 machine and it might not. Since you have experience with ResMed in one sense I would just convey that to both the doctor and the machine supplier and state your preference...unless someone will actually let you try both brands to see which one works best for you. I think mind set plays a huge factor in therapy and it hurts nothing to allow the mind set to be happy with the brand if at all possible.

But if the doctor and the DME are both hell bent on supplying Respironics...it isn't a piece of crap machine. Huge improvements now when compared to those older models in terms of noise and everything else.

I have the PR ASV but can't do a comparison for you since it's the only machine I have ever had. I never was on a cpap or apap. I went straight to the ASV. I do not know what you mean by having a sponge to decrease sound. There is no sponge as far as I've seen. My machine is noisy as I can hear each breath but I've come to think that it is because I'm on such high pressure (Inhalation 21-25). My hubby just spent his second night on a PR APAP and his is whisper quiet compared to my ASV. I think you will have the "New" spell of plastic on any machine you get. Clean it really good with a vinegar soak before you use it unless you have a problem with the vinegar. You might want to try to find a secondhand one to avoid the new spell, but I've been looking around for a backup and they are hard to find. Welcome to the ASV club!

I have both machines, the ResMed Adapt Auto and the the PR ASV 960. I love the ResMed, it was so much easier to fine tune. I'm working on the PR ASV cause it has more adjustments so to me it is a little harder to fine tune. I rotate the two of them but the ResMed is my primary machine. The PR ASV is the backup and I like to use it for awhile just to put some time on it and make sure it is working OK. I'm like Pugsy I just let my Adapt do the driving and I sleep very well with it, in fact I sleep well with the PR ASV also.

I have been using my PR960 for over a year now. It is my MUCH noisier than my Resmed S9 APAP, and I have been complaining about it since day one. My DME finally replaced it about one year in. The new one is a bit quiter, but doesn't equal my old S9. I am still arguing with my self as to which brand I should have chosen, but Crapria pretty much decided for me. I have never had access to the Resmed ASV machine, so I can't compare.
If I were looking for a new machine today I would probably choose the AirCurve ASV, just so I could compare.

Thanks everybody for all their feedback. It is good to hear they both would be good as far as therapy. Pugsy, I agree with you that deciding treatment will go well is an important aspect. I did that when I started CPAP, and slept well from night one. And the S8 was a long time ago, and all kinds of changes in materials as well as other aspects of the machines can have changed, so past experience may not help me here.

I hadn't thought about seeing if I could try both. I can at least ask.

My biggest concern is the odors from the materials. I know they will both have that issue, and I will have to air it out for a while before using it. I have found though that not all plastics are made alike, and some off gas more than others. Since we are talking about the inside of the machine, I can't soak it like I will all the parts and new masks. And I am anxious about it. It isn't just that the smell bothers me. My last episode of exposure to a sort of new office (six months after renovation) at my doctor resulted in 5 days of being knocked down with blinding migraine. It felt like a bomb exploded in my brain. I had been told the office would be safe for me, and I couldn't smell anything while I was there, so thought I was good. My body didn't agree.

That is why I am trying to decide if it is worth fighting if necessary for a certain machine. I don't know for sure the Resmed will be better, though mine was then. I would go with whichever one I did best with. With the more expensive machine, I won't have as much room for error, as I don't expect they will replace it unless there is a clear manufacturing problem.

Ogeo, the sponge (foam?) I am talking about is inside the machine, and helps damp motor noise. Foam can off gas for a very long time, even for its lifetime, so the chemical composition of that can matter to someone like me.

Pugsy said: " I like to think of the ResMed as a more plug and play type of machine with very few settings available that might need tweaking. The machine sort of takes over more. That can be both good and bad depending on what a person might need. Someone might need the "gentler" tweakable settings of the Respironics...or they might do better with letting the machine dictate things" That's really interesting...and, as usual, USEFUL info. I never would have thought there would be really any differences in things, other than Respironics makes .5cm jumps in pressure, and from what I've seen, ResMed allows tweaking down to .2cm.
As to the smell and off gassing...maybe a good option for you is to take whatever machine you get and let it run by an open window. Let the fresh air take away some of whatever it is that could ail you. I know the feeling, in any case. My big truck was NEW when I got it. I had to leave windows open for quite awhile to get the chemicals out of the air. I had huge sinus issues from that. Not as bad as if it would've been a truck someone had smoked in previously, though...and my ex used those tree type air fresheners in his dump truck. He got immune to the smell, and would add more before the first was "dead." I drove his truck for ONE day, got a nosebleed off the stuff...the trees got chucked out the window (I was hauling to a landfill, not littering willy-nilly) and windows got opened all the way. YUCK.

Sorry to hear you have this problem too, Tatooed Lady! I will definitely let it run by an open window as much and as long as I can.

I wish all those air fresheners would go to the dump ASAP! They are pretty nasty, and are having an effect on even those who don't know it.

Ogeo wrote:I have the PR ASV but can't do a comparison for you since it's the only machine I have ever had. I never was on a cpap or apap. I went straight to the ASV. I do not know what you mean by having a sponge to decrease sound. There is no sponge as far as I've seen. My machine is noisy as I can hear each breath but I've come to think that it is because I'm on such high pressure (Inhalation 21-25). My hubby just spent his second night on a PR APAP and his is whisper quiet compared to my ASV. I think you will have the "New" spell of plastic on any machine you get. Clean it really good with a vinegar soak before you use it unless you have a problem with the vinegar. You might want to try to find a secondhand one to avoid the new spell, but I've been looking around for a backup and they are hard to find. Welcome to the ASV club!

At the very bottom of the PRS1 machine, there is a 1/4 inch or so thick piece of foam rubber. It sits on top of the bottom cover for the machine. As air comes in the back of the machine, this forms the bottom of the air path and all the air flows around on this foam, so if it's stinky, you'll smell it a lot.

As for noise, I'm convinced that some PRS1 machines send a lot of noise down the inside of the hose to the mask, sort of like a trumpet or a stethoscope. This noise comes in through your nose and then conducts itself through your skull or the Eustachian tube up into your inner ear and you hear it that way. It's sort of confusing because others don't hear it, and it fools your ears about where the noise is coming from. It may vary with whether you use the humidifier or how full the humidifier tank is.

archangle wrote: At the very bottom of the PRS1 machine, there is a 1/4 inch or so thick piece of foam rubber. It sits on top of the bottom cover for the machine. As air comes in the back of the machine, this forms the bottom of the air path and all the air flows around on this foam, so if it's stinky, you'll smell it a lot.

As for noise, I'm convinced that some PRS1 machines send a lot of noise down the inside of the hose to the mask, sort of like a trumpet or a stethoscope. This noise comes in through your nose and then conducts itself through your skull or the Eustachian tube up into your inner ear and you hear it that way. It's sort of confusing because others don't hear it, and it fools your ears about where the noise is coming from. It may vary with whether you use the humidifier or how full the humidifier tank is.

Really useful information, archangle!!! The fact the foam is right in the air pathway is important. All it takes is a little moisture in there and it starts to get musty. Add that to the break down products in foam, and I will be sick every day. The info on noise issues are also very relevant, as I have a lot of trouble in my head with inflammation and am extremely sensitive to vibration. Sounds like enough people have issues with the noise in teh PR machines, and adding these on, the Resmed may still be my best bet. Unless someone tells me the Resmed's have exactly the same, or other issues. I know the noise may be more with higher pressure, but I would like to start with the lowest level possible.

Thank you to everybody who has given me their feedback! I am also busily reading everything I can about central apnea and ASV units, so I know what I am getting into. I'm so grateful this group is still going strong! I miss SWS and muffy (has muffy transmuted into someone else?), but it looks like new people have stepped up to the plate. Makes me feel safe that I will still get the kind of good info I need to be successful at my new therapy. It will take me a couple weeks to get the new equipment, and will probably have new questions then.

riverdreamer wrote: miss SWS and muffy (has muffy transmuted into someone else?),

I haven't seen SWS in a little while but muffy has undergone several transmutations since "muffy" I believe a brand new one in just last few days. I had an inkling a couple of days ago but pretty much confirmed not long ago.

I found him! Thanks for alerting me. Plus he is talking about things of interest to me, as usual. Have to keep my eye open for SWS, just in case.