Sleep study numbers -PLEASE HELP

[ColdHands]

Hello!  I finally got a hard copy of my sleep study numbers.  I have been diagnosed with Moderate complex apnea.  I was hoping there was more obstructive than CA events because I am very nervous about having brain issues due to some hereditary issues with my mom.  I can't upload here because I'm at work, but this is what the study said.

I had 58 CA evemts amd 33 OA events in a 363 min study.  My apnea score was 91 and hypop score was 46.  My number per hour of CA was 9.6 and OA was 5.5.  My highest hypop seconds were 68.5

From what this reads I lean more on the CA side of things, which makes me more nervous.  I have had several people on here assure me that CA can be caused by all sorts of things, not just a debilitating brain disease, but it gives me pause.  

there was no Cheyne stokes observed.  

it recommends CPAP and I was titrated at an 8 and I am waiting for them to get me my machine.  It did say I had 31.9/hour of PLM's as well.  

Any thoughts on any of this?  I just have this foreboding in the back of my mind that this is a the first step to worse things.  Let me know what you think.  Thank you

[SarcasticDave94]

I'd not be at all concerned about why you have Centrals, just that you do have them, and require an ASV to treat them. I will point to one machine, ResMed AirCurve 10 ASV. Since 50% or more of your events are CA, there's your ASV qualifier.

I'm not dismissing your concerns, I'm just mentioning it will be treated well with ASV. I've had the same machine myself, with that therapy for 2 years until COPD caused things to get more complicated.

[RayBee]

Great questions ColdHands.

I agree with Dave. I had and AHI of 49 and started with a ResMed ASV a little over 3 years ago. The worst part for me was that as my health continued to deteriorate due to my untreated complex sleep apnea, Kaiser was in no hurry to help me. It only took 9 months to eventually get a script and a pat on the behind - out the door. For 9 months, all followup appointments were scheduled 4 to 6 weeks out. At least I got the script for the best PAP machine for my needs. Other than that, Kaiser's sleep lab would score a big fat goose egg by me for their lack of help and slowness of the whole process.

Ok... Off my soapbox now. Yes, do get a ResMed ASV at any cost and as soon as you can. "Squeaky wheel" time may be appropriate. Perseverance in finding the right mask for you may be a bigger challenge than machine settings. The ASV only has a few settings, and as long as the pressure settings are not too low for your optimal therapy needs, it pretty much drives itself to the best pressures on-the-fly.

Please keep us posted on your journey and absolutely ask lots of questions here. Get setup with OSCAR and post your OSCAR reports along with any questions you may have. The folks here on ApneaBoard were paramount in getting my ASV dialed in. Also, use the "Search" engine to look up any concerns you may have as there is a good chance your questions may already have been answered.

All the best and Merry Christmas. 

[Sleeprider]

I also agree with Dave. When I first started on Apnea Board and about 10 years earlier on the CPAP talk forum, we had little grasp of complex apnea. It was something we were reluctant to discuss because we were concerned about this scary problem. After looking at it for some time, we found that not only are many people affected by complex apnea, the right therapy makes it completely disappear. The obstruction to proper therapy turns out to be insurance, that does not want to pay for advanced PAP solutions, and doctors that find it easier to just treat everyone as though they have obstructive sleep apnea, than to deal with the reality of complex and central apnea. Of the cases of complex apnea we have seen on Apnea Board, a few have been related to opioids, some to real neurological problems like ALS or Myathenia Gravis or acute heart failure; but by far the majority have been idiopathic with no known cause. Chances are, if you had severe disease, you would be the first to know. ASV works great and completely resolves this issue. One caveat is that PLMs may complicate identifying real centrals vs uneven breathing caused by movement.

You are actually ahead of the game with a diagnosis of complex apnea. Most people with the same result get an obstructive sleep apnea diagnosis. Your doctor actually acknowledges the real issue. In spite of that, you will be issued a CPAP, and you will probably fail that therapy. Don't quit. Your doctor seems to be on your side and will be expecting the call that it's not working, and can then advance you to a titration study evaluating bilevel and and ASV. Hang in there. Let us help. It will be fine.

[RayBee]

I went through 4 different PAP machine types at home and one in-Kaiser sleep study - of which I did not sleep for even a single minute. This took 9 months but appears to be the normal procedure to get to a confirmation of a Central or Complex apnea diagnosis. Not the 9 months, but just the progression of machines and tests. Then you get a script for an ASV PAP machine to purchase one (as was may case), or get one through insurance. I hope it doesn't take that long for you.

One thing you can do is let the office staff know at your sleep lab that you are willing to come in, in the event of a cancellation. I did that. And it shortened one of the 6-week followup appointments to 1-week.

BTW... Why do I have Centrals? I guess I'm just lucky. I have no history of opioid use let alone cigarette smoking. Nor any of the medical conditions putting me at risk. Nada. So, why do I have Centrals? I have no idea, but it has been going on undiagnosed for probably 20+ years. I can only base that assumption on how tired I was at work before I retired. Also looking back in hindsight with all the apnea symptoms that I had. Eventually came the assumption followed by a diagnosis when my body just had enough. My continued apneas resulted in checking almost all the boxes of symptoms of having sleep apnea - some closing in on being life threatening.

Trust me when I say that the journey to getting the right PAP machine (most likely a ResMed ASV) is well worth all the time and effort it takes to get you there.

[readingteacher]

I was diagnosed in November 2020 with severe complex apnea (35 apneas per hour). I started with a CPAP machine, because my insurance requires that a patient "fails" a CPAP before they can get a titration test and an ASV. The CPAP took care of the obstructive apneas, like it is supposed to do, but not the centrals because it is not designed to take care of centrals. I was still exhausted with severe brain fog. Fortunately, I had a great sleep doctor who ordered a titration and got me an ASV, which I started on March 30.

What a difference! My brain fog is much less, and I've even been able to start gentle exercise, which was impossible when I was so exhausted. I love my ASV, I call it my "magic machine".

I have no neurological conditions, thus I have "idiopathic" central apnea, like the majority of people with central apnea. My sleep doctor told me that my CO2 (carbon dioxide) detector cells in my brain are just probably set too high. Interestingly, I have learned through all this that low oxygen levels spur the body to breathe at a faster rate, but the CO2 level is what actually spurs us to have the urge to breathe. So when I'm asleep, my brain waits until my CO2 gets higher than average before it says "breathe". This interferes with the sleep cycle, and we don't get enough deep stage sleep or REM sleep to restore our brain and body. Hence, we feel exhausted.

So, yes, central apneas originate in the brain since the brain detects your CO2 level. But it is not a progressive neurological disease or anything like that. I just think of it as an individual quirkiness of my brain detector that has the annoying effect of messing up my sleep and making me feel awful unless it's treated. Using the ASV is like wearing glasses: they correct the symptoms when they are used, but they don't cure anything, so you have to use/wear them consistently.

So hang in there and pursue getting the ASV, because it will make a positive difference in how you feel.

[quiescence at last]

I wonder if there is anything that helps reset the signal to where is responds to lower CO2 levels. I know several divers and submarine sailors that have apnea and they have been in oxygen starved environments with bordering on poisonous levels of CO2 on a regular basis. I know you can get those brain responses to reduce in those circumstances, just don't know if you can reverse that.

I guess I'll go hunting the archives for that subject.

QAL

[S. Manz]

Don't panic! Keep Calm and Do Therapy.
CA is NOT caused by a "brain disease"  and there are (as you already know) a few things that cause it, one most prominent and well studied cause being long term opioid use and that even though science doesn't know exactly why a region in the brain stem that is responsible for generating involuntary breathing impulses through the phrenic nerves to your diaphragm, seems to periodically stop generating this signals when you sleep, they have no reason to believe that CA is "the start of anything" related.
In other words people with central apnea can and do go on to lead full productive lives without any other other central nervous system issues.
In fact there is a large segment of the CA population that has no cause for this issue (the idiopathic type).
At any rate it will be helpful to know what type of a machine your doctor has prescribed because Auto Servo Ventilation (ASV) type of machines provide the best form of therapy for CA.
In my experience having both the Philips and the Resmed ASV machines, I find Philips providing me with a much better quality of sleep than my Resmed does, however if high AHI numbers is something that may bother you, then I'd recommend Resmed because it tends to be quite light on detail and subsequently low on AHI numbers too. (kind of makes you feel better reading low AHI numbers).