Bilevel machine - advice needed

[LookingForward]

The CMS unit monitors are compatible with Sleepyhead and let you see a full night recording of your oxygen against the apnea events and machine settings, so that's a winner.  I think I would consider the CMS 50F from Supplier #19 or another source for a better price.  I'm not your best source for oximeter information and hopefully one of the members that use one will offer a suggestion.

I looked at the CMS Unit Monitor that you suggested and at the bottom of the product page it says the unit isn't compatible with a Mac, which is what I have. I'll need to look into more of them. That was my first time on that website and it looks like a good place to find one compatible with my computer.

[Crimson Nape]

You are absolutely correct. The software that accompanies the CMS devices is for Windows only. If you download the Silicon Labs USART/USB drivers for a Mac, you can import the CMS data into SleepyHead.

[LookingForward]

I decided to print out some of the data from SleepyHead with a letter and dropped it off at my Pulmonary Specialists office yesterday. I was hoping to get his advice quicker that way. He had the day off and I haven't heard anything yet today. But looking at last night's data, I truly don't know if it's safe to keep using the machine until I get an answer. The data showed 170 Centrals. Should I just ignore that number until the doctor gets time to contact me? Should I not use the machine?  The good is that it also shows that machine is very effective in controlling the other apneas so I am benefiting that way. 

Is it safe to use the machine as it is? I don't want to adjust the pressure until I get the answer about hypoventilation, as I think that's a strong possibility.

[Sleeprider]

With your current settings, you are experiencing unacceptable levels of central apnea.  This is most likely due to the pressure support being too high.  I think you would see immediate improvement if PS was reduced to 4.0, or in VPAP S mode 16 IPAP, 12 EPAP.  Personally, I think you could do very well in Vauto mode at EPAP min 9.0, PS 4.0 and IPAP max 16.0.  I have no idea how your settings were selected, but they are not working.

Is there a reason that a high pressure support is being used, like hypoventilation? If no, then it would be best to dial that back.

My recommendation to get you moving on the right path is unchanged. At least you can try lower PS and let your doctor know if it helps or not. If you are considering stopping therapy, why not just fix it?

[LookingForward]

With your current settings, you are experiencing unacceptable levels of central apnea.  This is most likely due to the pressure support being too high.  I think you would see immediate improvement if PS was reduced to 4.0, or in VPAP S mode 16 IPAP, 12 EPAP.  Personally, I think you could do very well in Vauto mode at EPAP min 9.0, PS 4.0 and IPAP max 16.0.  I have no idea how your settings were selected, but they are not working.

Is there a reason that a high pressure support is being used, like hypoventilation? If no, then it would be best to dial that back.

My recommendation to get you moving on the right path is unchanged. At least you can try lower PS and let your doctor know if it helps or not. If you are considering stopping therapy, why not just fix it?

I've been reluctant to change the settings because the of the hypoventilation issue. The only reason I would stop is because I don't know what it's doing to my body to keep it like it is. Can all those Centrals harm me? I'm also concerned about making my doctor upset with me. I have a history of doing my own thing as far as doctors are concerned and them no longer wanting to help me. I was trying to avoid that this time.

Also based on that other thread, if a new machine is needed I thought maybe it was best to keep things like they are to have a history to show the doctor. If I actually need a different machine, the history won't be there for him to see that maybe we need to do another sleep study. I know I'm second guessing myself. I'm just still so new to this that I'm really unsure what's best.

[Sleeprider]

You have been on therapy only 5 days or less, so we should not be so impatient as to not give the therapy and your doctor's settings a fair chance. I think the pressure support level is a problem, but realistically, your doctor is going to want you to use the therapy long enough that he has good cause to make changes.

If hypoventilation is a risk and your doctor will be following up with you, then you need to bring the high central apnea problem to his attention. You will need a bilevel with backup rate such as ASV to resolve the problem. I suppose it's possible this will self-resolve, but I think this is heading for a review after 30 days or so, then your doctor is going to have to make a decision on treatment. It is the high pressure support that is causing the central apnea. That can be fixed by either finding a lower pressure support that does not cause the problem, or prescribing the ASV or ST.

You asked about quitting therapy. Without any PAP therapy, you will resume having obstructive apnea and hypopnea and oxygen desaturation at levels found in your diagnostic study. I don't know what those were. I suspect that even with the 20 AHI central events you are better off with therapy than without. That said, nothing should keep you from continuing to call your doctor's office frequently to complain about the problem and try to modify the therapy (pressures) or change the therapy (ASV/ST) to get something that works. I would not accept being ignored. If your doctor is responsive and makes suggestions follow his directions and carry on. If he ignores or avoids you, don't worry about hurting his feelings, he is not helping anyway. There is nothing wrong with letting him know there is a problem and your are concerned. Give him a reasonable chance to help.

[LookingForward]

Thanks so much for you advise, SleepRider. 

I actually don't want to stop therapy. I still have so many issues to work out as far as masks, chipmunk cheeks and other things. I still wake up feeling like I didn't get much sleep and short of breath a little while. But I also am staying awake all day. Most days, even if I get tired in the afternoon, it isn't bad enough to stop and take a nap. My muscles feel better and I feel like I'm starting to remember things a little better. 

Officially I've only been on therapy for 5 days. Unofficially just over a month. That's probably why I'm feeling some improvements. The only reason I was considering stopping was the concern that even though I was feeling some improvements, was I actually doing more harm than good because of the large number of centrals.

I really don't want to stop and start while waiting to hear from the doctor or if he would want to change the machine. I don't want to loose the momentum I've gained over the last month in using it. 

I do value your opinion. I also fully recognize that I'm very new at this and have only learned a small amount so far. I don't wake up feeling great but I also don't dread going to sleep anymore either like I did the first couple weeks while using mom's machine. 

I will continue because it is helping to stop the other types of apneas. For tonight, I probably won't change the settings yet. If my doctor contacts me tomorrow I want to be able to tell him that I've followed his prescribed therapy and what the results are so far. 

Thanks again for your help and advise.

[LookingForward]

I finally got a message back from my doctor's office stating that he isn't concerned about the centrals since I'm so new to this bilevel machine. He did ask for the currents settings that the DME started me off with but told me not to be concerned.

I'm not sure what to think about it. But for now I will keep on going as is and give it a little more time.

[Sleeprider]

In theory, the settings came from a prescription he wrote.

I'm not surprised at the response, and early therapy results are not necessarily an indication of future success, but it sure sounds like he blew it off without much consideration, or explanation. I'm sorry, not my kind of doctor. YMMV

[ShaunBlake]

Hi, LookingForward, I'm glad that you've experienced some improvement in your feeling of well-being; that's almost as important as getting your O₂ up (or purging CO₂).  And it's great that your doc replied to you; just wish he had provided a response that addressed your deeper concerns.

I've been a PAPer for decades, but only discovered SleepyHead last winter, and am still a noob/newb about this therapy.  However, Sleeprider has already made the suggestion I would have done: to wit, reconfigure your device.  You've got a week in using the settings that the doc scripted, and prolly have an oximonitor on order.  Give the settings Sleeprider suggested a try and compare the results.  Seems your doc is pretty hands-off, and you have given his preference/assumption sufficient time to accumulate consistent data (albeit not ideal).

BTW, if you don't care to try installing the drivers that  Crimson Nape suggested, a Contec oximeter would still be valuable — although you wouldn't be able to incorporate the data in SleepyHead (SH), you would be able to see your O₂ sat levels each morning and know if you are adequately purging CO₂.  Make sense?

Happy PAPing!

(Please keep us posted on your progress!)