New-by Pacer, Brady and Epilepsy

Hi All,

I am glad this forum exists and thought I would take some time to introduce myself.  20 years ago, I had faiting episodes and thru interviews, doctors diagnosed me as having seizures.  Fast forward 20 years, I have an episode and in describing my symptoms to my doc, she suggests that I did not have a seizure.  I end up wearing a Zio patch for a couple weeks which leads to having a loop recorder installed.  The loop recorder over Christmas records 4 Brady events with me also passing out and having some very minor arm shaking.  My pace got down to 3 beats in 30 seconds followed by 15 second of no activity then magically, everything would start back up and I would wake up.

Dec 28th, my cardiolgist installed a BS Accolade dual chamber leads to keep me from going Brady any more.  Recovery is going well and I have been able to ease back into some running and MTB'ing.

I have not had any more syncope/episodes since the PM was installed.

Anyone else get diagnosed with epilepsy to have it then be diagnosed as cardiac?  I am disappointed in not being diagnosed with the cardiac one earlier in my life but am glad to be done with the epilepsy meds.  Also wondering how many pacemakers I will go thru being 50 years young? ;-)

Cheers, Mike


4 Comments

Yep! Me, too!

by Washingtonienne - 2018-02-06 23:56:46

Hi Mike, 
Quite a similar story for me.  Starting passing out in 1996, in middle school.  Was told to drink more water, eat more salt, lay down when I feel it coming, etc.  But it kept happening at random times.  In 2005 I was told it was epilepsy and started taking keppra but, after passing out again, we decided the meds weren't helping so I stopped taking them.  Passed out several more times and finally pushed for answers this past year.  So, 20 years of unexpectedly losing consciousness.  It was just "normal" for me so I wasn't eager for answers until I realized I had lost count of the number of times I had passed out.  At least 40 I can remember.  Some episodes were years apart, some were hours apart - I never could figure out my trigger.  

Got a loop recorder in May 2017 and by September, I had an other episode that recorded aproximately a 30 second pause. Yea - my "normal" wasn't really normal.  So, October 9 I got my pacemaker and all has been going well since.  

Coming to terms with my new bionic life, I too looked back on the last 20 years, frustrated at myself and my parents for not pushing for answers, frustrated at my doctors for brushing it off, scared to think about what the rest of my life looks like.  I'm only 34!  But I came to the conclusion that my parents and my doctors did what they thought was best at the time.  The technology of loop recorders didn't exist 20 years ago and by waiting, I got a pretty damn tiny loop.  Pacermakers are better now than they were 20 years ago.  If we had figured this out then, I would likely be on my 2nd or 3rd replacement and my pacer and leads probably wouldn't be MRI safe.  So, I try not to dwell in the "what ifs we caught this earlier?" 

When I think about the tech advances in the last 20 years, I can only imagine what the technology will be like in 10, 20, 30+ years.  Maybe my next pacer will be a self generating battery or an externally rechargeable battery.  In 10 years, will I have my second and last replacement?  My pacemaker is only 4 months old and it is already outdated!  The technology is only going to get better.  

Best of luck!  

Rhonna

Coming to terms....yup.

by mbcracken - 2018-02-07 10:01:25

Thank you for the very relatable story.  I am struggling some with my coming to terms with my bionic life now.  I will get to an accepting place soon.  My anger/disappointment with the medical community not catching this sooner is also fed by those dept heads not wanting to let go of my epilepsy diagnosis.  I try to keep it seperated but am still struggling due to how fresh all this has happened.

Did you ever have "deja vu" moments before passing out?

I go back in on Thursday for some PM adjustments.  I had another near fainting episode yesterday while working out.  My heart went from 140bpm to 50bpm (pacer limit) in about 2 seconds.  So, some more PM features I will get turned on.  Right now, I only have the PM keeping me above 50bpm.

I really appreciate having this community here to share this stuff with and get some company.

Cheers,Mike

 

Deja Yep!

by Washingtonienne - 2018-02-07 20:58:42

My first episodes were a bit deja vu-ish.  Once it happened a few times, I started focusing more on making sure I got to the ground.  So frustrating to know I was about to go out and there was nothing I could do to stop it.  

Glad to hear your pacer did its job and kiced in yesterday!  I haven't noticed any near faints but my first interrogation indicated that I'm pacing about 42%.  My low limit is 40.  I definitely notice an improvement in my overall energy.  I don't have to hit the snooze button for an hour anymore, find myself waking up consistently at around the same hour every day, don't nap anymore in the afternoons. Its pretty sweet.  

My heart still works... :-)

by mbcracken - 2018-02-11 01:11:41

So...turns out my heart didn't need my PM when I had a syncope episode while riding.   Never dropped below 50bpm so never kicked in...phew. 

Cardiac nurse worked his magic on Thursday and adjusted the PM to make sure my pace never does sudden drops below 120bpm once above 150bpm which I hit on a regular basis while exercising.

I am accepting a bit more that this tuning of my PM will take some time to come up with the right combo of functions turned on for my needs.  Amazing devices!

Cheers-Mike

You know you're wired when...

You need to be re-booted each morning.

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