Recent Dx (Primary Central Apnea) preparing for 1st DME call

[Snorkle Man]

I've been reading thru the forums since I was called back in for my 2nd sleep study - great site BTW.

I've been diagnosed with primary central apnea via Deborah here in NJ. MD says I did best on bipap 20/14. Expecting a call from Pacific Pulmonary shortly and wanted to make sure I was getting the best machine and related equipment that my insurance will cover. Of course I have no clue where to start but in reading the forums I've notice alot of folks have preferences for different equipment. All recommendations are welcome! My insurance is Cigna BTW.

In addition, any helpful hints/suggestions in preparation for my first conversation with PP are welcome. Tx in advance everyone!

[chunkyfrog]

Centrals on a bipap?
Wouldn't that require a step up?

[Snorkle Man]

Perhaps my timeline or description wasn't clear...sorry, I'm new to this...

Initial sleep study diagnosed primary central sleep apnea - second study was with cpap/bi-pap. During that study, it was confirmed that I responded well to bi-pap with a setting of 20/14 (that setting prevented the central events). Now I'm being told that the DME will be calling me soon...thus I wanted to see if anyone had advice regarding next steps for me - do I call my insurance company before talking to the DME? Are there questions I should ask? Are there certain types of machines that I should request from the DME that work well for patients with central events? Etc, etc...

Thanks!

[Janknitz]

Take a look at my blogpost "What you need to know BEFORE you meet your DME".

You need to call your insurance comPany so that you understand how your insurance covers DME and in particular what they require for bipap because it has different criteria than CPAP/APAP.

You must INSIST on a machine capable of EFFICACY data (AHI breakdown and leak data). I'm not sure of there are bipaps without EFFICACY data anyway, but someone else can tell us.

[Snorkleman]

UPDATE - I found out that my insurance covers everything 100% and I'm STILL waiting to hear from the DME. I'm planning to push the envelope tomorrow with my doctor's office to get a script in hand and reach out directly to the DME (as opposed to waiting and waiting for them to call me), but I wanted to get some exact recommendations from the forum on the equipment so that I can include them in the script (which is what I'm reading on the forum - that we should insist the MD put the manufacturer/model of the machine, humidifier, hose, mask, etc in the script for the DME). With that said, can someone please tell me which equipment to request? Again, I'm getting bipap with pressure settings of 20/14. Thanks!!!

[Pugsy]

There are 2 main players in the Bilevel pressure machines.
Respironics and ResMed.

BiPap is actually the trademark name for a Respironics bilevel machine
VPAP is the trademark name for their bilevel machines.

Bipap has sort of become a generic term.

Bilevel pressure means 2 different pressures....EPAP (exhale) and IPAP (inhale) there are bilevel machines that do only fixed EPAP and IPAP and there are Bilevel auto adjusting machines which offer pressures that adjust.

There are what I call simple bilevel machines and there are also some bilevel machines that are prescribed for people who happen to have complex sleep apnea or central sleep apnea. We commonly refer to those as bilevel ASV machines (adapto servo ventilation) because they actually act like a non invasive ventilator and force a breath.

I happen to use a "simple" bilevel machine. I don't have medical indications for the higher end ASV machines. I happen to have both a Respironics and a Resmed auto adjusting bilevel machines. There are difference between them on how they do things but I find that I do well with either.

You can take a stroll through the various bilevel machines..
https://www.cpap.com/cpap-machines/bipa ... /:1::::20:

Which one actually will you be needing? A "simple" bilevel machine like mine or one of the high dollar ASV machine? We have no way of knowing but if you only have obstructive sleep apnea and not many centrals and you are only getting a bilevel machine because of pressure needs then you likely will get a bilevel machine like mine.

Respironics used to make a non efficacy data BiPap..called the Plus in the M series machines but I can't find any indication of such a machine in the PR S1 model line.
So it appears that all new bilevel machines offer full data. For sure the Auto adjusting bilevel machines do.

Model of bilevel isn't as easy to recommend as a model of cpap/apap. The machines come in quite a range functions and things they address. We don't know your whole history.

But I will tell you that both ResMed and Respironics bilevel machines are quite comfortable...each has some minor pros and cons. The auto mode of those 2 brands differ a bit but both do an excellent job getting to their goal even if they take a little different way of getting there.

[Snorkle Man]

Thanks for the information. Please note that I have central apnea, not obstructive, so I'm being prescribed a bilevel machine for that reason. However, I think the doctor is planning to try the simple version over the auto SV.

Is there some specific information from my sleep study that I can provide that will help you understand my history/situation, and thus make a better recommendation?

[Pugsy]

Thanks for the information. Please note that I have central apnea, not obstructive, so I'm being prescribed a bilevel machine for that reason. However, I think the doctor is planning to try the simple version over the auto SV.

Is there some specific information from my sleep study that I can provide that will help you understand my history/situation, and thus make a better recommendation

Ahh...central apnea but trying the simple Bilevel machine first.
Respironics has long been the leader in bilevel machines (at least according to my DME) though I think that ResMed is right up there. I have used both brands and there are features of both that I find I like. Some minor pros and cons with each but none a deal breaker.

It may depend on what the settings your doctor wants to use.
Respironics auto bipaps in auto mode have a varying pressure support and ResMed machines in auto mode have a fixed pressure support. If planning on straight bilevel pressures with no auto adjusting pressure..either brand does about the same thing.
Which one would work best for you? We have no way of knowing. Not sure if any information from your sleep study will offer any insight though. Since we already know "central apnea".
Since you had a sleep study titration with a bilevel machine.. Often they will recommend the one that was used in a bilevel titration study.

I am going to send a note to someone who understands central apnea more than I do and see if he has any thoughts and will point him to this thread. I suspect you will probably be offered either a Respironics or a ResMed bilevel machine but I have no idea whether straight bilevel or auto adjusting. There are other brands out there but not nearly as commonly offered. Both are excellent though.
I don't think you will have much "choosing power" though. Certainly not like cpap/apap users have.
It's going to depend on the prescribed settings more than a particular brand.

The S9 VPAP...has a heated hose.
The PR S1 BiPaps..do not have a heated hose.
Heated hose is nice for more rain out control but is not a critical issue. Just a minor plus if it is there.
PR S1 machines...have easier hose management to the humidifier with the swivel attachment on top instead in the back of the machine....A minor plus for Resprionics.
These are minor feature differences.
If you are prescribed straight fixed bilevel...either brand will serve you well and I can pretty much bet you would be happy with either.
If you are prescribed auto adjusting pressures...then the different algorithms and different way of addressing pressure supports may or may not impact how well it treats your central apnea. One might be better than the other but we don't know for sure.

[morfenmom]

I was also diagnosed with Primary CSA.

One other thing to keep in mind is that because the ASV machine is significantly more expensive, your insurance company may require you to try a machine that is less expensive first. Mine did. If I don't respond well to the cheaper machine, then they will switch me to a more expensive machine.

[JohnBFisher]

Snorkle Man, first, let me offer my apologies for my delay in responding to this. As I posted elsewhere, my life has been a bit interesting recently. But I did want to add a note to your post.

First, as you might know, you got some great suggestions and input from others. This is a very helpful forum.

However, I did want to tackle a little bit to provide some education on Central Sleep Apnea. There's not a lot about it "out there", so learning some of this can be a difficult journey at best. I hope to help prepare you for your next few months.

Often BiPAP is NOT enough to address Central Sleep Apnea. If it has addressed your problem, great. A BiPAP unit is a lot less expensive than an ASV unit. However, you should be prepared to monitor your therapy and be certain your AHI remains at an acceptable level.

As another poster mentioned, sometimes insurance companies insist that CPAP and then BiPAP "fail" to solve your problem before they will pay for the much more expensive ASV therapy.

PLEASE do not get discouraged and "give up".

Do NOT settle for "this is the best I can expect"!!!! Untreated central sleep apnea is just as deadly (literally) as obstructive sleep apnea. I had a hard time getting my doctors to listen to it. It took me breaking down in tears before I could get a doctor to listen that I had HORRIBLE problems with sleep onset central sleep apnea. (I would stop breathing so long - over a minute - that my BiPAP unit would think I was no longer attached and turn itself off !!! But because it was sleep onset, it was not "scored" ... At more than a minute, WHO GIVES A TINKERS DAMN when it occurs !!!.) Unfortunately, by the time I received an ASV unit the uncontrolled high blood pressure had damaged my kidneys. I now have to be fairly careful about my diet and medications. Gee THANKS!

So, I repeat. Do NOT settle for "this is the best I can expect"!!!! Untreated central sleep apnea is deadly.

Now, I don't want you to panic about this. You appear to have a positive approach to your therapy. If BiPAP works, great! If sometimes is all that is needed. Other times, you will find it necessary to continue to check your therapy (the AHI score each day) to see if the therapy is addressing your problem. If you find the BiPAP does NOT address the central apneas, be CERTAIN to INSIST on a trial of ASV. This will require an ASV titration study. Essentially, they will titrate to eliminate the obstructive sleep apnea and make certain the high pressure is not too much for you.

You might be wondering why an ASV uses such high pressure? The high pressure helps you to continue your respiration even when you fail to breathe. You see, central sleep apnea results from an overshoot / undershoot cycle. That is for whatever reason (in your case the Positive Airway Pressure itself) you stop breathing as you should. This is the initial UNDERSHOOT side of the cycle. When that happens, the CO2 builds up in the blood stream until your body finally kicks in and restarts respiration. However, since the CO2 has built up abnormally high you start to slightly hyperventilate and blow off too much CO2. This is the OVERSHOOT side of the cycle. And unfortunately, it sets the stage for another UNDERSHOOT side, since you often will blow off too much CO2. This also leads to your periodic breathing (which your sleep studies and equipment have observed).

To break this repetitive cycle, the ASV quickly increases the pressure until it helps ascertain respiration even when you are not breathing as you should. This respiration allows your body to blow off enough CO2 so that you do not kick into the OVERSHOOT side of the cycle. Because the unit adapts to your breathing style and includes the timed response, it is known as Adaptive Servo Ventilation (ASV). For what it's worth, I note in my ICE app on my phone and in my MedicAlert emergency health record that I use a ventilator at night. You can not assume that I will breathe as I should when I am not conscious.

However, let's hope the BiPAP unit does the trick. As I noted, we sometimes see folks where that is all that is needed. Here's hoping that's the case for you.

Anyway, I hope that helps.

[Snorkle Man]

Thanks for the detailed response John...I do appreciate it.

Just got off the phone with the DME...they are sending out a Respironics "750", which appears to be the PR System One REMstar BiPAP Auto with Bi-Flex...I'm to expect a call from the local rep tomorrow or Friday with the unit for set up.

Any further advice at this point is welcome!

[Pugsy]

PR System One REMstar BiPAP Auto with Bi-Flex..

I have this machine. Give me a bit and I will send you a private message with the provider/clinical manual so you can see what all it offers.
It is a super machine. You can go ahead and download SleepyHead (in my signature) as it works great with that machine and you have full data.

I hope it does the job for you..if it doesn't the next step up is the ASV line.

[Snorkle Man]

Hi everyone -

Just wanted to provide an update...

Received my bi-level unit yesterday and put in about 6 hours of mask time last night...figure I slept about 4 hours total (based solely on my staring at the clock). Interestingly, despite the reduced "sleeping hours" versus my usual 6 or 7 hours, I feel somewhat rested this morning in comparison to pre-treatment sleep (not struggling to stay awake at my desk like I usually do). Maybe it's all in my head...we shall see.

I did want to mention that the DME provided a FlexiFit HC431 FFM, but I decided to use the Quattro that I received during my sleep study (I thought the Quattro was less likely to leak on me - based on trying both out before bedtime). Of course with a pressure of 20/14, any mask can literally be blow right off my face, and I struggled to maintain a consistent seal with the Quattro initially and during the latter part of my sleep (mainly around the sides of my mouth/cheek). During the first 2 hours in bed I struggled with said leakage and had some general trouble dealing with the high pressure for the first time (feeling like I'm swallowing air, general lack of comfort, etc). In fact, as I sit here at my desk, I'm feeling the residual effects of the pressure (my throat feels a little stretched out and my chest/belly also feels a little bloaty - if that makes any sense).

Any suggestions on keeping FFM leakage to a minimum are appreciated.

I also had a general question regarding bi-level pressures and auto SV pressures. If the doctor determined that the bi-level wasn't halting my centrals, and I was moved to an ASV machine, would I still be sitting at 20/14? I'm truly a little overwhelmed by the pressure that I'm set at right now...and was looking for a little guidance/encouragement, etc...

Thanks all!

[JohnBFisher]

... Any suggestions on keeping FFM leakage to a minimum are appreciated. ...

Wash your face before going to sleep. If you go without shaving you might want to consider shaving regularly. When I let it go for a few days I have all sorts of problems with large leaks. At least using the CPAP wipes to wipe of the facial oils seems to help the mask fit better.

I also sometimes use mask liners to help manage leak problems. Here are three different mask liners:

http://www.padacheek.com/
http://remzzzs.com/
http://quietusliners.com/

... I also had a general question regarding bi-level pressures and auto SV pressures. If the doctor determined that the bi-level wasn't halting my centrals, and I was moved to an ASV machine, would I still be sitting at 20/14? I'm truly a little overwhelmed by the pressure that I'm set at right now...and was looking for a little guidance/encouragement, etc... ...

Believe it or not, you will adjust to the pressure. An ASV unit can be just as demanding .. if not more so. If I fail to breathe it will ramp the pressure upto 25cm H2O to ascertain my respiration continues.

But no, if you go to an ASV unit, it will probably be with a lower EPAP pressure and a lower pressure support value. It's just that the upper end on the ASV will be a lot higher.

Hope that helps.

[RandyJ]

As JohnBFisher says above, I can also recommend the Padacheek mask liner for the Mirage Quattro. I use it along with the anti-leak strap they sell, and I can get the leak rate down to a minimal level. Worth every penny.

The only negative about the DS 750 is the lack of onscreen data (I have one); you can only see 7 and 30 day averages of AHI data (without breakdown). You will really have to read your card everyday to see what the CA Index is. Other than having to do that, it's a great machine. (The Resmed VPAP offers this data onscreen, so you don't have to read the card to see it.)