Re 11, I think you are touching on the outer edge of the frustration level mentioned earlier, understandably from a research perspective. I'm just chatting before going out to shovel a pathway from our deck door to driveway - like finding the neurological pathway that will allow for good sleep.
The two questions you propose are based on longitudinal studies; but, as one of the subjects of the study I care more about what can we do now, this month, over the next few months. Leaving BI with an appointment for next year is not proactive and I will have been on the same four meds for another year., which may not be healthy long-term. I'm not sure I'm getting access to updated best practices and word of who is getting favorable results in other locations throughout the country. Mixed/central patients keep getting referred to forums and chat rooms. If a slight adjustment or one new Rx might make a difference, it should happen more often than yearly when patient condition has not changed. At least this is a quick reaction/observation before grabbing the shovel. Btw, for any reader, these comments are not meant to be taken as criticism, just conversation about our topic. Throwing out random thoughts that come up based on personal situation and the goals of the website.
Re #6 above, and request for 3 top frustrations diagnosing and treating central/mixed sleep apnea, there really is a #1. Apparently there is no way to diagnose it and then adequately treat it. I had to go through all the surgical steps to eliminate obstructive sleep apnea to find out I was in the mixed/central group. That was difficult enough in itself. Then to find that nobody really knows how to deal with it and the local best people have to experiment with each patient and can offer little hope for improvement, let alone "cure", is very frustrating. I would be pleased to see some improvement as we try different meds, CPAP machines, chin straps, sleep studies, etc. As I have had several orthopedic type surgeries, I have convinced myself that anesthesia caused the initial onset of sleep apena in some way, as it came along with the timing of the surgeries and later in life. I used to wake refreshed and never felt the affects of apnea during the day. Since my brain waves are now "cappy", I have to think that the billions of neurons that combine to make trillions of connections have somehow been affected just enough to result in the central apnea. Have I talked myself into that cause or is there any research to back it up? If there is any other frsutration with treatment, it is the length of time between appointments and variety of treatment protocols. With other medical issues I tend to be proactive and with this situation I feel there is no sense of urgency from anyone involved, although it very much affects the quality of daily life.
There hopefully will be a a number of people who fall into this category. We have been through the entire obstructive apnea diagnosis and treatment steps (surgeries), only to discover there are 15-20% (?) who do not respond to CPAP and the usual medications. So, I will be looking for success stories from people in this sub-group to compare meds, devices, and any treatments that have worked. Its frustrating to look like you are sleeping, but your brain is not and you have to take meds to sleep and others to remain alert during the day. I have been working with someone at Beth Israel Deaconess, Boston.