Learning more about idiopathic central apnea (or mixed OA/CA)?

[jennykat]

What are some resources for learning about idiopathic central apnea, or even mixed apnea (obstructive and central)?

I have moderate mixed apnea and REM behavior disorder, but am otherwise in good health. My heart is fine, I don't take any prescription medications (no history with opioids), and my blood-work looks good (liver enzymes, thyroid hormones, B and D vitamins, hemoglobin, etc.).

My obstructive apnea is due to seasonal allergies and a deviated septum. My physicians are uninterested in exploring, explaining, or treating the central apnea ("Nobody knows why it happens. You're fine. If it were severe, you'd be dead."). I've had little luck finding scientific literature. Since my AHI is under 5 with APAP treatment, I haven't been prescribed an ASV.

Maybe I'm too cynical, but it seems that physicians are risk-averse and reluctant to seek a solution if you're "stable." A cured patient is a lost customer. For a decade, I took countless pills for whatever mood disorder I was diagnosed with that year. Because of my weight, age, and ability to hold down a job, it took a very long time to be recommended for a sleep study.

I want to learn more. I want a cure! If anyone has any literature or wisdom to share, or unconventional explanations for central apnea (besides opioids), please share. Thank you!

[Gideon]

Jenny,

Idiopathic means of unknown cause.  For this form of apnea the treatments are either avoidance or an ASV.

Your old posts (2018) have no attachments.  So could you please post full copies (redacted) of your sleep studies and current post of your recent charts so we can see what you are dealing with.

Thanks

[jennykat]

Hello Bonjour,

Thank you for your reply! I don't have a scanner handy, so I'll type up some notes from my sleep study in 2017. I've also attached some SleepyHead screenshots from Nov, Dec, and Jan.

The APAP helps, and I feel tired when I don't use it for a few days (e.g. allergies flare up or I'm traveling). I think there's a positional element to my OSA, which also worsens during allergy flare-ups. My REM behavior disorder is untreated. My physician suggested melatonin but it made no difference, so we discontinued it. She didn't have other suggestions, and I wasn't given Klonopin since I have sleep apnea.

What other information would be helpful?

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Polysomnogram 1: May 2017

• Mild to moderate mixed central and obstructive sleep apnea, moderate during stage R sleep
  
• Total-night RDI: 16
  
• AHI higher in the supine position (13) and during stage R sleep (19)
  
• Evidence of REM behavior disorder
  
• Stage N1 sleep - 13%, stage N2 sleep - 57%, stage N3 sleep - 0%, stage R sleep - 31%
  

Multiple Sleep Latency Test: Next Day

• 5 naps at 2-hour intervals
  
• Mean sleep latency of 3 minutes alongside stage R sleep in one nap
  

Polysomnogram 2/Titration: June 2017

• "Complicated titration study" involving CPAP, BIPAP, ASV, BIPAP S/T, and BIPAP AVAPS
  
• Regardless of the modality used, vocalizations during stage R sleep, consistent with REM behavior disorder
  
• Recommendation: APAP. May need to change modalities later to offer a backup respiratory rate // note -- this has not happened yet. My physician has said that my AHI is low enough that I don't need ASV, which I don't find entirely satisfactory
  

[Gideon]

On your screenshots.  Remove the calendar and pie chart.  That will reveal more of your stats and your settings.  These are important.

Your breathing stats are off.  I can't tell more than that since most of them are hidden.  Expiration should be longer than Inspiration and frequently in the charts you show they are.  More info is needed.

to help, for the same days show a chart with Events, Flow Rate, Tidal Volume, Minute Volume, Respiration Rate, Expiration Time, and Inspiration Time.  
Also nee a couple 2-minute segments of these charts to verify these numbers.

[SarcasticDave94]

Hope this helps, but some apnea patients like myself had to make the doc look at more than AHI. My first pulmonary doc was very stubborn, claiming if I didn't succeed with CPAP, and later BPAP, I was doing something wrong. My BPAP sleep study showed 124 CA to 24 OA, which supposedly was treated I'm thinking on a 15/8 bilevel pressure. I found a way to get docs attention, and I didn't go to jail.

No machine can record How You Feel. I made absolutely certain doc knew I was definitely NOT TREATED with BPAP while having tons of centrals at all times. Eventually I got on an ASV. You will need to complain lots and loud to get Doctor Duck to pay attention.

Whatever machine you need, fill in the blanks on that and get it by constant complaints.

[jaswilliams]

Your sleep study clearly mentioned the possibility of moving forward from an APAP to an ASV your CA's and periodic breathing is not treatment emergent.

As Dave says you need to be a squeaky wheel. Complex apnoea is inconsistent point out to your Dr the days if you don't feel rested. Your summary graph shows your CA's are low enough not to be an issue. But how do you feel ? You still have an element of Obstructive events so more minimum pressure would be recommended to reduce the Obstructive element of your sleep