update--pacemaker syndrome

hi everyone,

i just wanted to update those of you who remember me. i was complaining of a full feeling in my neck and face. SVC syndrome was ruled out. my old EP wouldn't do anything else. so for 1 1/2 years i suffered with this. i couldn't even exercise i was so miserable.

i switched EP's. he said i have pacemaker syndrome. he changed my settings and the full feeling is gone. he turned my rate smoothing off, lengthened my AV delay and now i am only going to pace in the ventricle if my rate goes below 30. i am wearing a holter to make sure i don't need my rate smoothing on. i will mostly pace in my atrium. he said people feel like crap when they are pacing in the ventricle and that's exactly how i felt. FOR ME....i don't need to pace in my ventricle. he wants my own heart to kick in there so i will pace in my atrium. you can't feel atrial pacing so that's fine by me. so what was happening was my atrium was fighting my ventricle and vise versa causing the blood to backflow.

i feel so much better. i can't wait to try to exercise! i love my new EP! this problem even got missed by CC dr.'s! my EP said there are lots of settings that can be adjusted to help you feel better. i am so glad i found an EP who listens and cares! so for those of you who are experiencing something you know just isn't right , keep fighting for yourself...get 2nd, 3rd, 4th opinions!

take care,
luckyloo

2 Comments

good for you

by pat - 2007-10-09 04:10:35

luckyloo,

i am so glad that you went to another doctor. its is so hard for us to realize that actually the doctors are working for us not the other way around. it took me a lot of years to learn that and actually someone half my age told me that. If you are not satisfied with a doctor, you do have the right to fire them, just as anyone would fire you if you are not doing your job. i am glad to hear that you are doing so much better.

pat

rate smoothing

by luckyloo - 2007-10-11 10:10:54

hi karen,

an EP is an electrophysiologist, a cardiologist who specializes in heart rhythms. we still use GP (general practicioner) and/or family dr.'s here in the US. i have a female GP. she acts as my "gatekeeper" for my HMO insurance. by gatekeeper, i mean she refers me out to specialists.

rate smoothing is suppose to help me out with certain arrythmias....make my heart beat smoothly rather than irregular.

other than the full feeling in my neck and face, i had an intolerance to exercise....real tired, SOB , just couldn't last more than a couple minutes. i would also get chest pain whenever i would try to cheer for my kids or something. i haven't been able to test that one out yet to see if that is gone.

just to clear things up...you will feel like crap if your ventricle is pacing inappropriately.

take care,
luckyloo

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