Seeking help/information

Julie wrote:because the whole nurse thing just seems way too much to live with and many people here have CSA and deal with it using certain machines... no nurses.

I found the diagnosed name of what they had, and it's called CCHS or Ondine's Curse. Here is a memorial written by a good friend of hers.
http://abriegrowsinbrooklyn.com/post/12 ... ren-savino

Well, her apnea was nothing like the kind we have, even those of us with central apnea. She was beautiful, and so are her children and friends. Hope you find your answers - have you looked for a forum or support group for Ondine's?

I will keep hunting. Her daughter, McKenna, also having Ondine's is in such a delicate place. How is this much different from Central Apnea? Nobody on this forum has that?! Damn, I guess it really is rare. It's a damn shame, I feel so bad.

sonofnothing wrote: Ondine's ... How is this much different from Central Apnea?

central apnea is a *temporary* thing, sometimes due to an imbalance in the respiratory drive cycle: "Normal respiration is driven mostly by the levels of carbon dioxide in the arteries, which are detected by peripheral chemoreceptors, and very little by the oxygen levels. An increase in carbon dioxide will cause chemoreceptor reflexes to trigger an increase in ventilation." there are various causes for this, which you can research if you desire.

we see people that are driven into CA sometimes by being over ventilated by their machine, having too much of a pressure support between inhale and exhale, and that depletes their co2, and suppresses the respiratory drive cycle, as a result, they get centrals until the co2 level builds up again, and they start breathing again on their own.

does that answer your question?