Central Sleep Apnea AHI numbers too high

[chathamite]

Central Sleep Apnea diagnosis and AHI numbers
 
I have been diagnosed with Central Sleep Apnea after undergoing a complete sleep study last January.
 
My problem is my AHI numbers have been inconsistent from a low of .04 in previous nights to last night’s reading of 10.6. The numbers are wildly varying.
 
I have tried both ResMed and Philips Respironics DreamWear headgear and various masks including full face masks, pillows, and nasal cushions.
 
I am on APAP mode with the ResMed AirSense 11 AutoSet CPAP with HumidAir with AutoSet settings Min. 6, Max 10 (cmH20).
 
In contacting my sleep pulmonologist, he recommended I increase the settings to the range of 8-12. I didn’t help. I woke up with a large mask leak and blowing air all around my full face mask.
 
My Central Apnea numbers are very high but my Obstructive number as usually quite low.
 
My last night’s OSCAR results were:
 
AHI: 10.63
7:54 minutes of usage
Large Leak 0.94%
Clear Airway  9.11%
Obstructive Apnea  .025%
Unclassified Apnea  0.25%
Hypopnea  1.01%
RERA  0.38%
 
Leak Rate of 12.00
 
The machine indicated I had a good mask seal and my AirWeb score was 98.
 
My SleepHQ report was as follows:
 
EPAP was at 8.0   95%
 
My equipment has been replaced at recommended levels by my insurance company so I don’t believe the equipment is at fault.
 
I have tried mouth-taping but not happy with the results of tape removal (painful) but I am willing to try another recommendation.
 
I believe my problem is either positional or mouth-leaking but I don’t know what steps to take to keep my AHI below 5.
 
Any suggestions would be appreciated.

[chathamite]

Will add Screenshot from today

[SarcasticDave94]

Welcome to Apnea Board,

OK here's what's going on:

• You were diagnosed as having Central Apnea.

• Now, you're currently in the insurance process of getting to the correct machine which is not the CPAP/AutoSet you're on now. This insurance process requires you to fail CPAP, bilevel AKA BPAP, likely ST unless you're complaining long and loud. Then finally you'll get to the correct machine for Central Apnea treatment, the ASV.

• Central Apnea are also Clear Airway or CA. All the same here.

• CA are consistently inconsistent by nature. They will be up then down without rhyme or reason.

• You will likely have idiopathic CA, as in unknown medical cause. Don't go down the rabbit hole of accepting there's something wrong with your brain. They'll want to have you go down the neurological path, get checked for this or that. No. The answer is simple, treat with ASV.
You will need to demand the ResMed AirCurve 10 ASV as it is the best.

• Can you post an OSCAR chart and the redacted full sleep study? If you do not have your copy of that full sleep study, you need to get that too. HIPAA permits it, and you need it for your personal files. This proves your need for the machine, and things happen to files, so you need this in hand. You also NEED to convey to your doctor that CPAP has failed! You say it yourself, it's not working. So tell doc, CA are too high.

PS saw the Oscar added. Probably typical CA diagnosis chart.

You likely want to try less EPR to help reduce CA, if it can. Lower pressure swings will help reduce CA in some. Turn off the ramp also.

To get you to ASV, you may need tested for BPAP and ASV combo, but you need to push doc for it. Rarely do they want to be troubled in treating CA.

[Sleeprider]

If your diagnosis is for CSA and issued CPAP then you will have to fail efficacy on a CPAP before being provided a titration sleep study to evaluate the use of an adaptive servo ventilator (ASV). That is the appropriate therapy for central and complex apnea. Your central events occur in two clusters with fairly long periods of time between those events. Our wiki "Justifying Advanced PAP" https://www.apneaboard.com/wiki/index.ph...P_Machines discusses the normal progression to obtain ASV, and you have to be your own advocate. No one is likely to walk up and offer it unless you complain and insist on an effective therapy for your problem. If your central apnea index is regularly this high, you should ask your doctor about obtaining ASV therapy.

There are many doctors that do not understand central and complex apnea and will treat all sleep disordered breathing as obstructive sleep apnea. If your doctor is one of those, you will need to change your medical team. If your insurance or financial resources are limited to fight for covered therapy, I can help you to find a used ASV to self-treat. That should not be necessary, but it's an option. Your general physician may be more of an ally in this than a sleep specialist. We can probably try some alternative settings to improve your results, but with your diagnosis it is preferable to use ASV than to optimize CPAP.

[chathamite]

Thank you for the quick responses!

I truly believe my medical sleep doctor is ignoring my concerns. I have mentioned to him in the past the need for ASV and he just doesn't want to listen-claims APAP is what is required and necessary.

Would I be better off seeing a Neuroligst rather than a Pulmonoligist  with Central Sleep Apnea?

I will look at the steps mentioned in obtaining an ASV device-looks like it might be a battle!

[SarcasticDave94]

Is your primary care physician one you can work with regarding ASV and CA? Any doc can script it. Other specialists probably not going to help much, they'll probably lean towards diagnosis within their specialty.

[chathamite]

Here is a copy of my Sleep Study done in February, 2023

[Sleeprider]

chathamine, you have a valid diagnosis for moderate central sleep apnea. Your sleep specialist regardless of specialty, has no interest in improving your therapy. He is fired, done. Get your records in order for your files and find someone who cares.  If you have a general physician, internist or other that manages your routine health care, and that doctor is one that listens and responds positively to your concerns and requests, then ask that doctor to assume your sleep care.  In Medicare terms he is your treating physician. A board certified sleep specialist is only required to supervise clinical studies and to sign off on reports. Your treating physician can interpret those reports and make treatment recommendations and prescriptions based on your history and evidence presented to him.  

So let's assume you fire the specialist, your main doctor assumes your care and you have discussed this CSA diagnosis and shown that CPAP fails to achieve efficacy.  You can ask for a prescription for ASV based on your doctors evaluation of your health history, tests, CPAP results and data and his personal and professional judgement. Get the Rx. The next battle may be obtaining coverage for the device, but with a prescription in hand a DME should submit a claim and identify any cause for denial or dispense the device. Let's assume you are denied on the basis that testing has not demonstrated that you benefit from the ASV.  For about $500 to $1100 you could obtain a used ASV and demonstrate efficacy and therapy benefits without a clinical titration, or your doctor could refer you for clinical evaluation of ASV.  Your choice.  It's a process you can win, and one that many members here have completed successfully.  Get away from specialists and work with someone that cares.  

The Medicare approval guidelines for ASV are simple. Prior to initiating therapy, a complete facility-based, attended PSG was performed documenting

1. Diagnosis of either CSA or CompSA, and
   
2. Significant improvement of the sleep-associated hypoventilation with use of an E0470 or E0471 on the settings the physician prescribed for initial use at home while breathing the usual FiO2 .
   

Translation: HCPPS Code E0470 is bilevel without a backup rate like the Aircurve 10 Vauto, and E0471 is a respiratory assist device like the Resmed Aircurve 10 ASV.  To satisfy this part of the requirement, you can rent, borrow, buy an ASV or take a titration test.  Everything else is already done.

[chathamite]

Thank you for your great advice and plan of action. It appear that regardless of what I attempt to lower my AHI to 5 or below, it is doubtful that that can be achieved through this setup. I have struggled for months to lower my AHI and even if I had low leaks, the AHI would vary from night to night. I wish I could count how many masks and headgear I have purchased in an attempt to sleep better and feel refreshed-it has not happened. I even mentioned to my sleep specialist that I was not awaking refreshed and feeling I had a good night sleep-his response that happens to some people.

Your kind words have encourged me! I know realize that under the current APAP settings, nothing will improve.

I am following your suggestions regarding the ASV pursuit.

You reassurance is a blessing to me.

[SarcasticDave94]

Keep us updated, we're here to help you succeed.

I've used ASV before, and had to get it the hard insurance way with very little doc support. Almost anything else would be more pleasant.

You can set your own ASV when you get it. You'll definitely want to focus on the ResMed AirCurve 10 ASV.