Sick Sinus Syndrome

I had a pacemaker installed in my 30s for what was called "Sick Sinus Syndrome". My symptoms were light-headedness, my heart occassionally thumping around out-of-beat when doing nothing, and dizzy-spells. Sfter a helluva long running around from doctor to doctor, I was finally given a 24hr heart monitor to wear -- 24 hours later they rushed me into surgery and that was that.

It was explained to me that I needed it because there was a long "pass" or "pause".(I forget). It wasn't an immediate cure-all, but after some tweaking my light-headedness, dizzy spells, and heart-skipping ceased.

I had maybe two or three checkups in 10 years as I was told I used it less than 1%. I hated the idea of having this thing, and I was happy to ignore it. 

A few months ago all hell broke loose and my pacemaker started going crazy. My heart started thudding like someone had taken one of those giant gong drumsticks and hit me with it repeatedly. All my original symptoms returned and disappeared every other day.

I checked into the hospital and they replaced the old St. Judes with a newer model. Now the new model doesn't fit into the old"pocket" they made, so it sticks out a helluva lot more. The other was hardly visible, this one is as subtle as Iron Man's pacemaker. It's bigger and thicker and supposed to be better -- better like "Windows 8" better! 

Now all of my symptoms are back with a vengance. The last three months have been nothing but hospital, clinic, and specialists visits. I can't work or even think straight; it's like I have a hangover without the headache (or the alcohol for that matter).

All the tests show a "normal" pacemaker. Great.

One specialists said I should just meditate and try and get back to the place I was before I had the symptoms. Great.

Anyone have any advice?

4 Comments

Sorry to hear

by Chantellerose - 2017-03-13 09:33:01

You seem to be having a real struggle with it. I don't have much advice to give as your situation seems pretty complex. But good luck hope you get it resolved soon. Keep us updated x

Not right

by Gotrhythm - 2017-03-13 14:48:39

Your pacemaker is "working fine" does not mean that what your pacemaker is doing is right for you! We are all different and sometimes it takes several tries to adjust the pacemaker so that it responds optimally for our needs.

I understand your frustration. I've been there, and I know how crazy making it is to be treated as if YOU are the problem. But to be fair, doctors are people too, and nobody likes to be made to feel incompetent, or to have a problem (you) that just won't go away.

Even if you must travel, consider going to a univerisity hospital. If your problem was common, your doctors would have figured it out by now. That means you need to go somewhere that sees the rare occurances. And you need to go where the doctors are challenged, rather than irritated, by the puzzle that is you. That means a teaching-research medical center. There, with any luck, you look like publishable paper, rather than problem.

I'm convinced a trip to Duke saved my life.

One other piece of advice: just before your appointment, do everything you can to bring your symptoms on, even at the risk of collapsing. Doctors can't treat what they can't find.

Good luck.

 

changes

by JLTREBEL23 - 2017-03-13 17:53:10

Have they done any changes to you pacemaker from how it was originally programmed? Did they replace it with the same brand? Settings the same?

Follow up

by zetagirl - 2017-09-18 02:22:09

Hi Tooyoung41. Just wondering what your outcome was. I'm trolling for answers for my Mum. Dr keeps saying " the PM is working fine " but she is constantly out of breath and has no quality of life. Love to hear from you and how you went.

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But I think it will make me feel a lot better. My stamina to walk is already better, even right after surgery. They had me walk all around the floor before they would release me. I did so without being exhausted and winded the way I had been.