54,000 EXTRA HEARTBEATS am I crazy???

[Mom2four85]

ok after reading more am I crazy how can I have 54,000 EXTRA heartbeats (see my original post) in a 24 hour period

I've read some have had 32,000 but that's the most Ive found here; still reading to find out more

Anyone else experience this?

[Mom2four85]

They want me to have Ablation  also - his script says -

Schedule for HUT theer
EPS & Carto Ablation
routine labs (BHCG)

Thats what I get out of the writing, but may be something similar

where are the doctors on this site? I haven't even been to alot of places on here yet, Im too busy absorbing posts :)

and I LOVE the heart rhythm tracker IF I can figure it out - I don't haven't paid alot of attention to myself and need keep track daily of whats going on when.

[Momto3]

I'm so sorry your choice to seek a 2nd opinion offended your doctor : (

I kinda did the same thing, but it was what I needed to do for me.  I'll bet you understand....My 2nd opinion actually started with this website.  One of the doctors on the site gave me some great advice and I followed through.  He was incredibly helpful and understanding.  The doctors on this site are awesome!!  Anyway, I did end up with the 2 ablations, and I would do it again : )

What type of surgery are you having?  I hope you are able to get your files, since it is so important to understand your own health.  Knowing your EF and whether or not you have any other anomalies is important to you!  Don't give up : )

Keep me posted!!

[Mom2four85]

Connie; cardiomyopathy sounds like what the EP was saying would happen when I asked what if I didnt have the surgery or the surgery didn't work for me.

I am so glad to hear the surgeries worked for you.  I just cannot imagine being normal again or anything even close, I bet it feels wonderful.

I had a problem with my cardiologist - I "stepped on her toes" because I wanted to get a second opinion.  Since then, they have used 1 excuse after another for the past week not to give me a copy of my tests.  They even made it so difficult for me to have my files forwarded I thought the new EP wouldn't take me.

I'm really interested to see what my results say and what my EF is and what they say about the valves (what does a "tad" mean for instance) - which is what my pcp thought the original issue was.

Mayo Clinic, is about a 3 hr drive from me - but they are out of network for my insurance and would cost $12,000 instead of $3,000 with an in network dr like at the university near us.

I go to the university on Friday morning, so if I find anything out I'll post it, otherwise I may not post anything until after surgery unless Im getting cold feet :)

[Momto3]

I know what you mean about the WOW response!  LOL!!  Nurses and non cardio doctors have even commented..."Have you had this checked?"  Um yes, many times...lol.

My story is a little weird, but hey aren't they all?  I am originally from Cleveland, so the Cleveland Clinic was in my backyard.  My EP is at a different hospital in Cleveland, but I have been to the CCF for an evaluation and TEE.

After years of having mitral valve prolapse and insufficiency (under control) as well as PVC's in the thousands, an annual exam revealed a decreasing ejection fraction.  My structurally "normal" heart was changing.  I'm not saying that to alarm you, so no worries.  It's just what happened to me.  Anyway, I get a phone call to let me know my EF had dropped to about 40% (cardiomyopathy).  Long story short, my doctor thought it was possible that the cardiomyopathy may be a result of chronic extra beats!!  WHAT!!???!!!  So, I went on anti-arrythmics for about 7 months, but didn't like the side effects.  That's when I had the 1st ablation.  About 8 weeks later, a Holter picked up 6000 PVC (singles, couplets, nsvt, etc).  I was thrilled with the improvement, but the doctor wanted to try to ablate another foci.  Had the 2nd ablation 3 months after the 1st, and I can honestly say I now know what it's like to be in normal sinus rhythm!!  It has been nearly 6 years since the 1st procedure, and I am still amazed at how different it is not to have so many extra beats.

Turns out I developed "PVC-induced cardiomyopathy" which didn't really have a name at the time.  It is rare, but it does happen.  Have you considered a trip to Mayo?  Is it nearby?

Take care!  Hope you find answers for reducing your extra beats and feeling better at the same time : )

[Mom2four85]

Thank you Connie. I know the feeling, I'd be willing to bet mine were alot higher than what they have picked up on the holter also.  

When my cardiologist & EP read the report they said WOW are you sure this isnt a typo? WOW lol  I have been researching daily to find others with more than "normal abnormal" readings like ours.

I was told by my drs office I was "Mayo Clinic" material and the most interesting case they've seen - all my labs came back normal (sodium 135 - 1 pt low) and my heart is healthy so they're bewildered and haven't heard of this rate in a "normal structual" heart.

2 ablations? wow, may I ask why you had to have another one? I want to make the right decision for me and I need a "miracle" like you and have my life back.

[Momto3]

Hi Lisa!!

I'm not sure what's the most extra beats I've had on a Holter recorder since the only report I have with actual numbers says 22,000+.  That said, I'd be willing to bet BIG time that it's been a lot higher!  For so long, I lived in bigeminy and NSVT.  I had 2 successful ablations in 2003, and I have to tell you it was truly a miracle for me!  I hope you find an EP who is as persistent and understanding as the one I have.

I was VERY fortunate in that I never passed out.  I can imagine that adds a lot more anxiety to the already crazy mix!  Please keep us posted : )

Connie