Central Sleep Apnea Support Groups

August 15, 2023 9:31 PM

One of my parents has severe central sleep apnea and sleeps at most 3-4 hours a night. It's been difficult to find qualified doctors for them, much less a support group, but I thought I'd ask here just in case someone else has experience with this. Appreciate any resources and referrals the hive-mind has to offer.

Dad developed central sleep apnea in 2017 after a heart attack during which neurological damage was done when his blood was filtered while being operated on. He continues to exist out of sheer willpower and cannot take any sleeping medicines for fear that he will suffocate. Long COVID has further complicated his exhaustion by giving him profound mental fog along with the usual "old man" stuff that comes with turning 70. The people he's talked to so far, doctors included, do not understand that central sleep apnea is NOTHING like regular sleep apnea and is neurological, not mechanical. He's tired and lonely, my mom and I are tired and sad, and we really just need some support from people who know more than everyone we've encountered to date. Thank you.

posted by The Adventure Begins to Health & Fitness (3 answers total)

Central Sleep Apnea is a discussion topic at the private Sleep Apnea Support Group on Facebook; there's a larger patient cohort for the obstructive type, but the group has 50K+ members.

For other resources:
Check out Dr. Rami Khayat's research on central sleep apnea. (Khayat is a professor at UC Irvine, with a medical office in Newport Beach, CA.)
Maybe your dad should see a CSA-savvy neurologist?
Some CSA patients have better sleep with non-narcotic drugs like acetazolamide and theophylline (off-label, closely monitored); there's also the remedē system (an implanted medical device).
posted by Iris Gambol at 1:37 AM on August 16, 2023 [1 favorite]

(IAAD, NYD) He needs to see a sleep medicine specialist. If the ones he's seen have not been helpful, I suggest seeking a second opinion at the nearest academic medical center. Central sleep apnea is not "regular" (obstructive) sleep apnea, but it's not exactly uncommon—an experienced sleep specialist should be able to manage this.

You don't mention if he's using a non-invasive positive pressure ventilation device such as BiPAP, but that is the mainstay of treatment for central sleep apnea (different from CPAP, which does not treat central apnea). If he doesn't have this, or his device has not been appropriately customized so that he can consistently and comfortably use it, I am not at all surprised to hear he feels terrible!
posted by telegraph at 6:26 AM on August 16, 2023 [1 favorite]

I found Apnea Board a very helpful community when coming to understand my own obstructive sleep apnea. There are a lot of discussions of central sleep apnea there too (and you're right, they are very different things.) The community is a little old fashioned and full of folks who are know-it-alls but often they really do know a lot and have years of experience and sympathy. It takes a week or two of reading the board to get the vibe and find the useful information.

Seconding the recommendation for a sleep specialist; it's a whole discipline at major hospitals and treatment centers. It may also be that developing central apnea later in life is unusual, most discussions I've read are about relatively young people finally getting it diagnosed. I'd expect a good clinic will want to start with a new sleep test and round of diagnostics. That seems annoying but is probably worth the trouble.

My best wishes for your father. In my case treating my OSA gave me an enormous improvement in quality of life.
posted by Nelson at 6:53 AM on August 16, 2023