CSA in REM sleep
I have moderate to severe CSA primarily in REM sleep. Apparently there are only a handful of published cases (for REM sleep), none of which are relevant; mine is caused by chronic intracranial hypotension. It will go away in a few weeks when my CSF leaks are treated, but it will come back in 6-12 months and I'll need to deal with it again.
I'd prefer to wait as long as possible between CSF leak repairs (riskier than blood patches), but that will mean dealing with the CSA periodically. CPAP makes it worse and theophylline only helps a little. Diamox is ruled out as it lowers CSF pressure. Remede seems extreme for something that will only happen a few months a year.
My local sleep clinic is not interested in digging into this any deeper. Has anyone heard of other cases since 2016? Is this the sort of thing Mayo Clinic would look at more closely?
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It sounds like you need the assistance of an adaptive servo-ventilator. The ResMed version is excellent (I am just a user, and of their basic Elite model, straight CPAP. No affiliation or other kind of relationship with ResMed.)
I hope I won't run afoul of the culture and rules here, but you will get pointed and experienced help at apneaboard.com, a not-for-profit site that helps people to acquire and to adapt to various kinds of respiratory therapy associated with sleep disorders. If I do, I'll take my lumps.
Thanks, that's on my list as a last resort. Given that CPAP, BiPAP and a predecessor to APAP all made it worse the last time I had CSA, and I truly hate using them, chances of success are small.
Given that OSA in REM sleep and in NREM sleep have significant differences, and that there is almost no data on CSA in REM sleep, I'm kind of on new ground here. I was hoping to find a sleep specialist who recognized that.
A little oxygen (2 L/m) completely resolves it. I'm not sure if that's typical; most data seems to be on CSA with heart failure.
I did find an article about a case where nalmefene caused CSA, and I had been taking low dose naltrexone which is very similar to nalmefene. So I've stopped that.
This will likely all go away in a week, but I'd like to be better prepared when the CSF leaks resume and the CSA will probably resume as well. The lead time on CSF leak treatment has averaged a month or two, so I'll likely have CSA for at least a month or two each year on average.