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beginning anew
#1
beginning anew
Hi, I am new to this board. I have been wrestling with my situation for three years now concerning my machine. It has been a journey into the unknown that has taken me from being productive in the workforce with a goodpaying job to being at home living on the last of my savings as my life falls apart. I went from having insurance to now having it available but am not able to work.
I am now going to start all over again on my own with prescription from the new doctor. When I ask for a suggested quality machine of course no answer. The Respironics has proved to be a machine and system that is part of a past situation that failed. That is out of the equation. I am moving forward to save myself and at a cost I can afford. Central 86 percent. The new doctor did at least say the word Apap. I will go with that.
My question is what is a bulletproof good Apap that can handle higher pressures and not heat up? I will have to learn how to use software so need something that is user friendly. I use a humidifier but have found that just room temperature air going through the reservoir provides all the humidity I need. Please someone help me. Thank you.
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#2
RE: beginning anew
Hi Goodonya, welcome to the forum.

If you are experiencing 86% of your apneas as centrals, then you probably need an ASV type machine, such as the ResMed S9 VPAP Adapt or the equivalent Philips Respironics unit. These machines are specifically designed to detect and treat central apneas. I know from my own experience that the APAP style machine eliminated my obstructive apneas, but not the centrals.

The problem with an ASV is that they are hellish expensive, which is not what you want to hear. Supplier No 2 (see the suppliers list at http://www.apneaboard.com/forums/Thread-...plier-List ) might be able to provide a "gently used" machine for you. But before you get the the point of buying a machine, I'd suggest you try out an APAP for a few weeks and see if it does the trick. (A lot of suppliers will rent a machine for a fixed period). If not, then you may need to step up to an ASV.

Could you share a few more details, such as the sleep study results (AHI) and the pressures your doctor has prescribed? That will allow members to target their help for you.

Very best wishes and sincere hope that you will be able to work through this difficulty and get your life back.
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#3
RE: beginning anew
Hi goodonya,
WELCOME! to the forum.!
It sounds like you will need a more extensive machine than an Auto-CPAP if your pressure is 24 CMH2O.
Auto-CPAP machines only go up to a pressure of 20 CMH2O.
Hang in there for more suggestions and best of luck to you.
trish6hundred
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#4
RE: beginning anew
(12-23-2013, 08:37 PM)goodonya Wrote: My question is what is a bulletproof good Apap that can handle higher pressures and not heat up? I will have to learn how to use software so need something that is user friendly. I use a humidifier but have found that just room temperature air going through the reservoir provides all the humidity I need. Please someone help me. Thank you.
Phillips Repironcis System One Auto 550 or 560 (newer with heated hose option)
Model number printed on the label at the bottom of the machine

Resmed S9 Autoset (not Escape Auto), can be used with the heated hose or without
Model name printed next to on/off button

Both machines detect central apnea but don,t treat it (see DeepBreathing post about machines treat central apnea)

Both machines supported by free readily available software
SleepyHead supports both machines and works with Mac and windows computers

Resscan supports Resmed machines and only works with windows

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#5
RE: beginning anew
I am not sure how long you've been on or off a PAP machine. Or what pressure you used to be on, vs what is being suggested now.

My point is, that many people have centrals when they first start using a machine, and/or if their pressure is raised a fair bit - and after a 3-5 week period of time, for many people the centrals all but disappear. If that happens to be your case, a good quality APAP would be great, but if a large quantity of centrals persist, the need for an ASV machine quickly becomes critical.

As cost IS an issue, I like the idea stated above about possibly renting a machine (APAP) for a few months and see what happens with the centrals.
*I* am not a DOCTOR or any type of Health Care Professional.  My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
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#6
RE: beginning anew
I will have to go back through and study your great responses to make sure I have gotten everything.
The machine I have is a Respironics Bipap auto SV advanced. My insurance paid right around $5,500 for it. It had a 5 year warrantee. I brought it back to the supplier when its pattern of heating up at exactly 6.5 hours would wake me up. Mostly I never achieved that long of sleep. The supplier swapped it out for a recertified machine with no warrantee. It worked much better for a while. When its performance began to slide I brought it back and learned that it was recertified with no warrantee. I struggled on with it as my sleep disintegrated to 3 hrs. a night. I took it back because of overheating issues. They tested it and it was fine. I brought back when it further failed into algorithm search on inhale and exhale all night long. They tested it and it was fine. A full face mask pulsing on my face on inhale and exhale all the wretched hours of sleep I could wring out of it. As my sleep disintegrated everything else has been placed into unwilling slow mode. I am now not using anything at all. I am in a limbo where it takes a good 8 hours just to recover from what is apparently happening as I sleep. This is the same as I experienced with the machine in its failing ability. I am no longer working after an active ambitious life I am doing nothing much at all. I am out of gas and cannot figure my way out of this and it is simple.
I do know this I am done with this machine and the setting of 24 has at no time been workable for me. My ongoing complaints and constant miserable compliance produced zero change from the doctors office. I am not some kind of whining wimp but that is where I am done to a turn.
Min Epap:6, Max Epap:9, min pressure support:4, Max Pressure support:15, Max Pressure:24, Backup Rate Off: Flex Setting:3

Thank you for listening. I am embarrassed by this situation. I am not a real technical guy and not good at the doctors office. I am done with the supplier that switched machines on me. I am done with the Dr. I started this journey with. The new Dr. came up with the Apap suggestion because he was unable to make his software work with this machine and he heard my mention on being completely out of pocket now. A new sleep study is around $4,000 here.



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#7
RE: beginning anew
Hi again Goodonya

The setting of 24 max is very high, and can only be achieved by an ASV machine. You have basically two choices - Philips Respironics (which has been a big failure for you) or Resmed s9 VPAP Adapt. I am a relative newbie but I've spent a fair bit of time reading the forums, and I don't recall seeing anybody having the overheating and other problems you describe with the Philips. You may just have been really unlucky. The Philips has a lot more adjustable parameters than the Resmed, so it's easier to screw something up if you don't know (in detail) what you're doing.

I used the Philips for about a month before changing to the Resmed (which is what I bought). I found the Resmed much gentler. I recognise your description of the mask pulsing on your face, and the Philips did that to me. The Resmed doesn't pulse like that - in fact sometimes I wake up at night and wonder if it's turned on. For me, the Resmed was the better choice. It's slightly cheaper than the Philips here in Australia, but I believe it's more expensive in the States (I presume you're in the US?). By the way I just looked up one of the on-line sellers and the price is not as much as your insurance paid.

As discussed above, if your central apneas are endemic, then you will need an ASV machine to treat them. Did your original sleep study show the centrals, or was this something that developed after you started PAP therapy? A lot of people develop centrals under therapy, and it's a matter of reducing the pressure then gradually increasing it over a period of time. An APAP machine might do the trick. But I don't think there's any guarantee on that. Because this is being paid out of pocket, you don't want to lay down a lot of money only to find that the machine isn't treating you properly. On the other hand you definitely don't want to get a far more expensive machine if you don't have to. That's why I suggested renting an APAP and see how it goes.

Whichever way you decide to go, it would be a good idea to download and install some software so that you can monitor your own progress each day. SleepyHead is a user-friendly freeware program written by an Australian guy, and supported by donations. It has a few bugs, but most people find it more than adequate and easy to use. ResScan is the "official" program from Resmed. I find it more technical and less friendly than SleepyHead. You can find a link to download either program here: http://www.apneaboard.com/forums/Forum-P...-and-Links

It's probably a good idea to have a new sleep study but four large is a heckuva lot of money. I'm sure I've seen much lower prices mentioned in the forums - maybe you can shop around? Alternatively, you could try an in-home study. The DME will send you the kit, you wire yourself up and sleep in your own bed, then send the kit back and they extract the data. This probably isn't as thorough as a sleep lab test but is a lot less expensive. Having the test will give you a new baseline to measure your progress.

If I was in your position, I'd take the sleep test (assuming finances allow), hire an APAP machine and initially set the pressures wide open (usually 4 to 20 cm H2O). Download SleepyHead or ResScan and monitor your progress with them. Don't change the settings frequently - you need a couple of weeks to start seeing a trend. After a couple of weeks, you can adjust the pressure to home in on the correct setting for you (then leave it unchanged for a while to see if a new trend develops). If you're still getting a lot of centrals after this process you might have to consider the ASV machine after all.

Which ever way you go, keep checking in here. We're not doctors or health professionals (with a few notable exceptions) but we can at least provide the benefit of our experience to help you along.

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#8
RE: beginning anew
What DeepBreathing said! Great post! Best of luck goodonya getting your life back! Everyone on this forum is compassionate and encouraging, providing a wealth of information from experiences. Lots of good advice and tips here. Keep checking back.
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#9
RE: beginning anew
Doesn't a bipap go up to 25?
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#10
RE: beginning anew
One small correction, yes, a "bi-level" machine goes up to 25. (bipap and VPAP are brand names for a bi-level machine). Otherwise I completely agree with deepbreathing.

Also - a thought in my head is this?? A machine you can afford (an APAP), that will treat everything but centrals is MUCH, much better than what you are doing now. And, if you were to use a recording Oximeter (I own a CMS50F), you can verify that your O2 stats are staying in a safe range, even with centrals - if so, you'd have won the bulk of the battle.

Skip the study, buy a good APAP with data, get a recording Oximeter, set the ranges wide open and start tracking. The key to stress issmall changes over a long time is key.

I am on a bi-level, and based on data it looks like (due to meds)I could really benefit from an ASV machine, but there's no money to be had so I work with what I have.

Remember, the actual goal here is;
Get good sleep
Lower the AHI as much as possible
Keep your O2 stats near/around 88-92

Whatever you do to reach those goals is always better than doing nothing. I can relate. Last work day for me was May 25, 2010 - and I finally got disability on 02/01/2012. And don't get Medicare til July 2014.
*I* am not a DOCTOR or any type of Health Care Professional.  My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
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