Negative Effect of Rate Response on someone with Pacemaker Syndrome
I've had my ICD now (on my third one now, a CRT-D) for 10 years. It did it's job with a few shocks early on but VT is fortunately mostly a thing of the past. However over the last 5 or so years I've become quite symptomatic (low blood pressure, syncope) when BiV paced during activity. I thought is was just progression of cardiomyopathy but I couldn't get out of my mind that it was pacemaker induced (I had all the classic symptoms of Pacemaker Syndrome). Before my last implant I complained enough to my EP that he did the switch to the CRT-D which helped for a bit but over time the symptoms recurred and got worse to the point when I stood up and walked briskly or up stairs BP would drop to <70 or so, and if I didn't lean or sit it was lights-out. I would almost always get that "pacing" sensation like you do when the tech speeds up your heart on device checks immediately prior to the drop in blood pressure so that became a warning. Would get same sensation when riding over a rough road or riding lawnmower.
After almost fainting while walking into last EP appt. he made three changes: (1) turned off LV (BiV)pacing, (2) extended AV delay to 250 (from 180) and (3) turned off my rate respoonse. RVPacing went from 95% to 3%, It's been a few days now and I feel like a totally new person. I'm not parinoid about standing and walking while waiting to see if BP would drop, and the fatigue and fear has gone. I feel NORMAL!! I still can feel when my RV is paced, but it's usually when lying or sitting, I'll fill in some more details and add some questions to the forum members later but for the time being I want everyone to be aware that in my case, that wonderful little accelerometer in my PM has been making my life miserable.