Inching closer to right settings
I've decided to post everytime I have a setting change on my St. Jude dual chamber pacemaker/ICD witn an accelerometer. The reason is that I have learned more from the collecive experience on thie Forum than I have from my EPs/cardiologist. My hope in posting is that others can take a bit of information away or can contribute their experiences.
Before yesterday, the PM portion of my box was set in the DDDR program. That is a setting that the four EPs I've gone to believe is OK for sinus node incompetence but the American College of Cardiology says different. I believes the setting is for AV node issues. Since my implantation (16 months ago) I have had issues with long periods of feeling short of breath or not being able to be as active as other people with PMs. In my research to find the problem that doctors didn't seem interested in solving, I met a retired engineer for one of the major PM companies. His first question was why I had the "R" or rate response turned on if I hadn't been diagnosed with Chronotropic Incompetence?That is what that is for. I coldn't answer that but said I would ask at my next appt. I did.
Once again, the EP seemed a bit uninforming about settings in general and specifically. I told him that if he doesn't see a problem, would he turn it off and we can see. He did. Right now, everything seems better, but it's been less than 24 hours, so I have to factor in a placebo effect. The true test will be when I jump on my bicycle. But he said he would not change any of the other settings because he saw them as consistent with my appaarent problem (A slow sinus node). I don't trust him.
Over th past year, I have found documentation from legitimate sources dating in the 1980s in which a standard setting for the PM to treat SSS was DDD(R). But in 2017 the American College of Cadiology published standards for PM settins and clearly stated the it wasn't for DDD but rather AV block. So I'm confused. The engineer I spoke with said he also understood the DDD(R) setting to be for AV block.
I am in search of a place to go where I can for a collaborative look at my condition and settings and condition to make sure it is accurate. To date my heart has been tested and studied in every way it can, but I don't have a diagnosis except that my resting rate is low. As i understand it, that alone doesn't equal SSS.