Help with Complex Apnea

[Joey67]

Hello.  Struggling to deal with persistent Central Apneas (I think they are CA).  Any help would be most appreciated.

Initial sleep study showed AHI of 47 (no central apneas detected at this time).  After a months long struggle, gradually adapted to every night use of CPAP (RESMED Airsense 10 Autoset) Attached OSCAR data from a typical night before things went sideways.    

Started to get increase in AHI from about 3.5 to 6.5 with the entire increase in events classified as Clear Airway or Hypopnea.  More alarmingly my SPO2 as measured on my Wellue Ring was showing frequent drops into the low 80’s whereas I had never dropped below 91 when things were going well.  Possible relevant point is that I lost about 25 lbs around this time.   I played around with pressures but didn’t get anywhere (didn’t really have a plan).  Just quit using the CPAP since sleeping without it showed never having SPO2 below 90 but I still had about 5 events per night of more than 4% SPO2 drop. So still not ideal.

I met with my pulmonologist and he didn’t think I was developing Central Apneas.  He then looked at the OSCAR printouts I gave him and he said “well maybe”.  He then suggested a BiPAP titration study.

This study was basically a disaster.  My AHI ranged from 25-47 depending upon pressure settings with all events classified as Central Apneas or Hypopnea with SPO2 dropping to 77%.  Next visit with pulmonologist, he again said he doubted I had Central Apneas. Then looked at the titration study results for the first time and again said, “well maybe”.   He prescribed a Aircurve 10 ST Bipap with 17 Ipap and 10 EPAP and back up rate of 12.  I told him I thought an ASV sounded more appropriate for me based on the RESMED Titration Guide from what I read.  He said, “no an ASV is for people that retain CO2”.  That is not what I understand to be true, but he is the doctor.  So I’m giving the ST a try.

I tried his 17/10 but these settings were impossible for me initially being so much higher than what I was used to.  I normally breathe less than 12 times per minute while sleeping, per my fitness tracker, so the machine back up rate seemed to be pushing me to breath faster while falling asleep than I wanted to and I just couldn’t handle this much pressure at first.

I tried IPAP of 13 and EPAP of 9.  Total disaster.  Only lasted 1.5 hours.  AHI of 15.6.  SPO2 dropped below 90% for a total of 2 minutes in those 1.5 hours and reached a low of 85.     

I am now trying IPAP of 10.6 with EPAP of 7 (totally random on my part – I just picked something tolerable hoping it would help).  This is much better but still not great.      

I need some education to help me head in right direction!  Pulmonologist seems fine with me just sleeping without any CPAP since I don’t desat below 90 ever without it.  However, I want to do better than that if possible.
I will appreciate any help.

[Sleeprider]

I told him I thought an ASV sounded more appropriate for me based on the RESMED Titration Guide from what I read.  He said, “no an ASV is for people that retain CO2”.

Ask me how many ways this is wrong!  The machine for someone with excess CO2 is a noninvasive venitlator like the ST-A iVAPS.  The use of ASV is obvious and can be proven with a titration test.  If you get tired of all the B.S. and want to just get therapy out-of-pocket, I can help you find a reasonably priced machine.  If you actually want good healthcare, you have to find a provider that doesn't live in a cave.  Your next step based on diagnostic tests and PAP results is to trial ASV.  You need a doctor that is competent in treating central apnea, rather than one that thinks, well if it's a nail (apnea), I have to hit it with a hammer (CPAP).

[Joey67]

Sleeprider, thank you for the response.  I guess I have discovered recently that I needed to find a different pulmonologist.  I did just make an appointment with a sleep group at a large medical center but when I told them the results of my BiPap titration study they told me that I had to make an appointment with one particular doctor that deals with Complex Apnea.  On the one hand this is encouraging because that doctor presumably deals with this much more than my current pulmonologist however it was also depressing because the soonest I could get an appointment is in August.

So now I have to make some decisions.
1. Continue to make some efforts with the Airsense 10 ST but too many more nights with SPO2 down to the 80's and I am going to punt on this option
2. Don't use any PAP device at all until my August appointment which isn't the end of the world but also not ideal
3. Find a reasonably priced ASV.  This is not my top option as I have great insurance and would prefer to not pay out of pocket, but fortunately I do have the financial resources if I determine this is necessary.

I will surely contact you if route 3 is how I end up going and I decide to pursue the ASV machine.

On a related note.  I think I understand how the ASV machines work.  However, my Airsense 10 ST is a bit of a mystery to me.  How does the backup rate work on this machine?  I am assuming that if the back up rate is set at 12 BPM (or one breath every 5 seconds), the machine will initiate a breath for me at the IPAP pressure if I am apneic for 12 seconds?  Is that right?  I am not finding a ton of information on the ST.

[Sleeprider]

The ST is the wrong device for mixed or complex apnea. Here is a copy of the Resmed Clinical titration protocol. It shows the conditions each machine is approved to treat, and it should be obvious that ST is for obstructive pulmonary disease and hypoventilation, vs the ASV. Your current doctor should just quit harming his patients and stay in his lane. Again, if you have the resources to pay for an ASV, I'll be happy to help you find an affordable source. Page 28 for ASV for central and complex apnea, Page 37 for ST/ST-A for chronic obstructive pulmonary diseases. At this point, your doctor's lack of knowledge and improper prescription is simply malpractice.

https://document.resmed.com/en-us/docume...er_eng.pdf

[Joey67]

Sleeprider, thank you very much for the information.

I do appreciate it.

[sauerkraut]

Sleeprider;
(At this point, your doctor's lack of knowledge and improper prescription is simply malpractice.)
     It is a real shame that the Medical Community can't figure out how weed out the Quacks with 10 plus years 
of education and supervision !!  Even worse some state medical boards won't revoke their license after multiple
deaths ..
You do a great job of helping People on Apena Board !!  Don't let the frustration get You down !!
Best of luck ..   Steve

[Sleeprider]

Sauerkraut, it does get frustrating to continually see doctors prescribing ST bilevel to treat central apnea patients. There is a device for that, and it's not ST. I have no idea where this profound and common misunderstanding comes from. Most patients with central apnea that are treated with ST are exhausted and don't know why. They often figure that if this is treatment, they are better off quitting...and they do. Fortunately, I have seen many members end up with the right treatment, and most are amazed with the results. I hope my exasperation with the incompetence and stubbornness of the sleep specialty, does not get in the way of these members seeking the new lease on life that is possible once the doctor gets out of the way.