Doctors have no answers - Searching for answers

[jtfortner]

Hi everyone,

I found this message board while trying to use OSCAR software, only to realize my Luna G3 isn’t compatible. So, I figured I’d post here in case anyone has experience or insight into what I’m dealing with.

Background:
Lifelong exhaustion, excessive daytime sleepiness, and dream-related disturbances have followed me since childhood. I was diagnosed with ADHD about 3–4 years ago, and while Vyvanse helped me function better, I now suspect it was just keeping me awake rather than addressing the root cause.

Diagnosis & Studies:
I didn’t initially believe I had sleep apnea. I actually did an at-home sleep study (through SleepDoctor.com) in December 2024 to prove to my wife that I didn’t have it. I was wrong. The test showed both obstructive and central apneas (AHI over 30, CAI over 15).

Since then:

• Feb 2025 – In-lab BiPAP titration: Central events persisted; switched from APAP to BiPAP. 
  
• May 2025 – Full PSG: Documented Cheyne-Stokes respiration, PLMS, and high AHI/CAI.
  

Therapy Progression:

• APAP (early 2024): Some improvement, but centrals remained high. AHI averaged ~15, CAI ~8.
  
• BiPAP S (Feb–May): Set at 10/6. My numbers actually got worse. There were several nights with AHI over 50. Average AHI ~30, CAI ~15.
  
• Auto BiPAP (June 2025): Initially promising — AHI dropped to ~7, CAI ~5 — but the numbers are climbing again. Last night: AHI 15, CAI 11. Still waking up exhausted.
  

Where I Am Now:
At my last appointment, my doctor literally opened with: “You, sir, are an enigma.” They’ve recommended:

• Echocardiogram and carotid ultrasound
  
• ASV titration if echo is normal
  
• Brain MRI
  
• Possible MSLT down the road for suspected narcolepsy or idiopathic hypersomnia (if events are stabilized)
  

Why I’m Posting:
I can’t find much out there about cases like mine. If anyone here has experience with:

• Central apneas worsening with therapy
  
• Cheyne-Stokes respiration
  

I’d really appreciate your thoughts. I just want to understand what might be going on, what questions to ask next, and make sure I'm on the right path.

Thanks so much for reading.

Cheers!

JF

[SarcasticDave94]

Welcome to Apnea Board,

OK so if I'm correct in deciphering your description, AHI on the test was over 30 and about half were Central at 15. I do see discussion of an ASV, which is referring to Central Apnea treatment.

My take is your current Apnea treatment, and therefore the machine itself, is lacking in ability to treat Central Apnea. If you've not yet done so, you and your doctor will be addressing scheduling an imaging department test called echocardiogram, required to explore going on to get ASV that does treat Central Apnea. The echocardiogram is an audio visual recording of the heart, a cardiologist will review and state evaluation, specific to your needs is the LVEF% value. This is a left ventricle ejection fraction in percentage. Passing is 45% or higher.

I had to do this to get ASV in 2017. I have a heart condition called PVCs (Preliminary Ventricular Contraction) a timing issue. My low LVEF in '17 was 55%, passing for ASV purposes. A later test after using ASV, my LVEF increased to 63%.

Anyway, after doing this, and it sounds like an overnight Titration including ASV, your best answer is requesting a ResMed AirCurve 10 or 11 ASV. I myself used this 10 series ASV.

[Sleeprider]

Sometimes it’s more economical to just buy ASV out of pocket and avoid the cost of tests, scans and evaluations the rarely help to find a cause for idiopathic central sleep apnea. The modern auto ASV is a safe device for most individuals and works so automatically that titration studies are unnecessary. The device usually works well at default settings, and any optimization is easily based on the data from the device and patient feedback. If you want to just get on with it and buy an ASV to prove what thousands of dollars of medical evaluations can’t, we can steer you that direction. If you prefer to continue on the path with your doctor that has proven by his words you’re some kind of unicorn, that’s fine too. I’m just say this is a common and relatively simple therapeutic solution to your well documented problem.

[jtfortner]

Sometimes it’s more economical to just buy ASV out of pocket and avoid the cost of tests, scans and evaluations the rarely help to find a cause for idiopathic central sleep apnea. The modern auto ASV is a safe device for most individuals and works so automatically that titration studies are unnecessary.  The device usually works well at default settings, and any optimization is easily based on the data from the device and patient feedback.  If you want to just get on with it and buy an ASV to prove what thousands of dollars of medical evaluations can’t, we can steer you that direction. If you prefer to continue on the path with your doctor that has proven by his words you’re some kind of unicorn, that’s fine too.  I’m just say this is a common and relatively simple therapeutic solution to your well documented problem.

[SarcasticDave94]

Supplier #2 sells refurbished units, then there's DOTMed. You'll want a ResMed AirCurve 10 or 11 ASV. You may be required to have a script. Get doc to write one for ASV.

[Sleeprider]

A significant number of members have purchased units on DotMed at significant savings. Just search for the Resmed Aircurve ASV and you will find units from new to used.  Focus on vendors located in the U.S. with good reviews.  We can certainly help you with the setup and optimization.  There are only 4 settings available on the ASV, EPAP min, EPAP max, PS min and PS max. In ASVauto mode the unit will usually correctly titrate with EPAP min 4.0, EPAP max 15.0, PS min 3.0 and PS max 15.0.  We will then consider your results and feedback to make therapy more comfortable and effective. I have never seen a titration analysis that actually did better than our coaching.