New rhythm problem post pacemaker

• by Spunky_1
• 2014-08-30 12:08:13
• Complications
• 2011 views
• 8 comments

Hi! I was implanted with a Boston Scientific Ingenio at the end of July. Prior to this my HR was usually in the low – mid 40s with occasional forays into the upper 30’s while waking. My heart would also pause then run tachy (150- 160 range). I also dealt with Chronotropic Incompetence and I fainted a lot. My official diagnosis is tachy-brady sss w/ sinus pauses and CI. I had hoped that all of this would be over once I got implanted, but I’m still having some problems.

Feel free to skip to the end – I’m probably going to ramble before I get to the actual questions and I apologize in advance! This is all new to me and I'm a bit overwhelmed trying to figure this all out.

My initial rate was set at the standard 60, upper limit 160 (I’m only 30) accelerometer: passive, activity level: active, MV sensitivity: 8. I had my first adjustment and the EP Dr. bumped the rate to 70 (which is much better). I’m currently pacing at 69%.

I was still having tachy runs which would bounce me from 70 to 120/130 and then back again. I also had very strong pvcs, which while not pleasant, were also a fact of life for me prior to the implant so I wasn’t too bothered by them.

I still was struggling to move around without feeling tired and short of breath so the EP’s PA changed the MV sensitivity from 8 – 12. When I came home from the appointment (on a Friday afternoon) my heart felt like it was just racing with any little movement. I did not sleep much at all that night because everytime I rolled over I felt like I was running 10 mph. However, I felt I needed to give my heart a chance to settle down before I decided if it was going to be too high of a setting.

It was much calmer by Monday morning (thankfully!) however, after I got up and did my morning routine, I went in to get my dog up (she's quite a senior citizen and has a heart condition herself) and as I was sitting on the floor petting her I went into a weird rhythm that I have never had before last Monday morning and I passed out while sitting down. It felt like (maybe?) a string of pvcs with no normal beats in between and it was fast (probably 120 – 130 or so).

I called my regular Cardiologist’s office (not the EP’s office) and got into see his PA. She interrogated the pacer and said there was nothing odd recorded, but that it would not note pvcs or hr’s under 160. I have passed out twice more since then. Once while sitting and once while exercising. Both times I felt that same rhythm. I have also had brief episodes of that same rhythm, but slower (around 80-100) maybe 10-15 times since last Friday. It seems to be getting better now.

My questions for my fellow pacer's are these:
1. My follow up with my EP is not until September 17th and his office informed me that if I pass out I was to “go to the emergency room and then your EP can review the tests they ran at the ER.” My family is pushing me to be more forceful with my EP’s front desk staff or get in touch with Dr. directly (I happen to have his email) so I can be seen sooner, but I hate to be a bother only to have them interrogate the pacer and not see anything again. I also don't want to email him and have him give me the same response - ie: go to the er..."

I also do not want to end up with another EP besides my own doctor because one of the other EP docs in his office told me several years ago in no uncertain terms that I most certainly did not have any electrical problems with my heart. (Which was both completely wrong and mean of him. It would be just my luck to get him if they actually did scheduled me for an emergency appointment.) Besides I trust my EP and I want to know what he thinks about this mew rhythm, not some other doctor. Suggestions?

Also:
My regular cardiologist’s PA put me on metoprolol which I totally hate! I feel like an exhausted zombie who couldn’t fight my way out of a paper bag. Plus I’m still tachy – only now I have low blood pressure to accompany it. (87/60 standing with a hr of 70 - 144 this afternoon…so fun.) I went from having half of my days as bad days because of tachy runs to having 100% bad days because I’m so tired / sick (nausea/ headache/dizzy) from the drug and I’m still tachy.

I really do not want to take this medication anymore. I am starting to feel a little like I may never be able to live like a normal person again. Thoughts on medications for controlling sss tachy runs / weird pvc runs?

Also, could the beta blocker be depressing me? I am usually pretty cheerful in spite of stuff, but I am not coping really well the past few days.

I guess I’m feeling a little beat up. I got blessed with a couple of autoimmune diseases several years ago and I feel like I have my hands full dealing with those. Now with sss on top of it I feel like I’ve got both feet in the grave and the medical field is tossing dirt on me. Thanks for ‘listening.’

Sincerely,
(Used to be a)
Spunky_1.