I have been taking Norpace CR for 10 years. I seem to suffer from many of the side effects the manufacturer claims are rare. After 3 1/2 years of Norpace I required a pacemaker. Doctors indicated the Norpace had suppressed the function of my natural pacemaker, thus requiring implantation of unit. The pacemaker really does not help me too much in regard to my level of activity. It is a rate responsive unit, but does not respond unless i am jogging or walking rapidly. I suppose my question(s) is, is there a pacemaker available that responds to something other than a jarring movement and also is there another antiarrhythmic that does not induce so many side effects? My cardiologist seems to take the "if it ain't broke" attitude on this. I am 46 years old and very active, but feel pretty rotten most of the time. I am grateful to be alive, but would really like to feel better than i do. I also had an AVR in 1994. I suppose, too, that I am waiting for the other shoe to drop. help!
Firstly I will tell you of a great reference for just this issue, that is chapter 26 in the text Clinical cardiac pacing by The Cleveland Clinic's own Dr.Wilkoff,and this you can find in any medical library.
Now for some information for you on pacemakers and the availability of rate responsive adaptations. There are three generations of pacemakers designed to respond to the need for an increased heart rate with activity. The first generation was simply a small device within the pacemaker that when jarred would increase heart rate, but not necessaruily in proportion to the level of activity since it can not discern levels of jarring so to speak. The second generation pacemaker has a little diving board like device that responds better but still is not great at varying levels of activity. The last generation of pacemakers incorporates ventilation(breathing) into the equation so that there can be more device investigation and responsiveness based on level of activity. Probably the "cadillac" of this third generation is Medtronic's Kappa 400 which uses both a jarring type mechanism and a ventilation type mechanism, incorporates all this information and responds appropriately. Let me now state that a cadillac is not always what is necessary, rather the first attempts should be made at customizing your pacemaker to your needs. Often a pacemaker will have an upper rate limit and in someone with an AVR where high heart rates are something to avoid in general, the pacemaker is set too low to allow the jarring device to respond appropriately. I apologize if I am getting technical, I just do not want you to get the impression that newer is necessarily better. Considering that Norpace is potentially the cause of your symptoms, I am led into the next subject. Certainly there are many anti-arrhythmic drugs available, and most physicians are taught that any drug that significantly alters lifestyle in a negative way should be changed, and or replaced. If you are interested in seeking a second opinion at the Cleveland Clinic Foundation, just call 1-800-CCF-CARE and ask to see Dr. Wilkoff or one of the other pacemaker specialists in our EP(electrophysiology)cardiology department.
Honestly I feel that every effort be made so that no patient felt "rotten all the time", especially someone so young. I am not sure what you are referring to when you state that you are waiting for the other shoe to drop, but I wish you luck in getting that pacemaker programmed in such a way that you are able to be active and feel well. Information provided in the Heart Forum is intended for general informational purposes only, any diagnosis and treatment can only be made by your physician(s).
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