More on Central Apnea

Thought I would report back after my post last week (hi to Rooster -- you were such a help).
I had been diagnosed with central apnea (caused my taking Methadone which was prescribed from Restless Legs Syndrome)... and after that diagnosis, got little help, still feeling miserable and not sleeping (and still addicted to Methadone). An hour with my therapist helped me get ready to fight the hospital system to get a new sleep test and a new machine. I also called around to various hospitals and was given hope by people who said that what I had could be treated.
I e-mailed my primary doc, who referred me to a neurologist, who referred me to a pulmonologist....but that's okay. Think I now have the right person.
After I wrote and asked for his help, he wrote this back:

Unfortunately- things may not be as cut and dry as your other sources may suggest. I just returned from a meeting- current topics in sleep medicine- sponsored by the American Academy of Sleep Medicine. One of the sessions was on opioids and sleep apnea, given by a physician from Mayo Clinic. There is a lot we do not know about the problem. We do know it is common, 30-70% incidence of central apneas with opioids. However the long term significance of it and any therapy is unknown. As you might expect, getting off opioids is the preferred therapy. Oxygen works more than 50% of the time. There are mixed results from bilevel and ASV. One study with ASV showed no benefit, another showed partial benefit. However, the published data on these therapies is somewhat scant. Also, for most people- these therapies are quite expensive. Bilevel is usually $1000+ per year in copays, ASV is even more expensive. Perhaps we should have a prolonged visit of 40-60 minutes to try to sort things out. It would also be of potential benefit to me to start with some monitoring of your breathing on your current therapy- to help me make better use of future therapy and tests .


SO...I asked when I could see him, get my breathing monitored, etc. And we'll see where it goes from here. I feel like I'm getting closer to being able to live normally. I had to leave my good job because of all this mess. I think I'm a bright, energetic, creative person and I want to use all that! I'll let you know what happens because the more we share experiences with each other, the sooner we can all get help. Thanks, Doety.

Thank you Doety for sharing you news. Lots of hurdles for you. Sending a prayer that they won't be too high for you to manage. Keep us posted. Large family here that will care.