24/7 Pacs with debilitating side effects

[Gardengal456]

  I have been dealing with 24/7 PACs - 28,000 extra beats
every day -for over a year. The onset of this arrythmia
condition was triggered by Kapidex.  My cardiologist put me on
cardia, bystolic, metropolol, and flecanaide, all of which made my symptoms
worse.
    My condition has continued to worsen
with constant, uncomfortable sensations of squeezing,
pressure, burning in my chest area and debilitating fatigue
if any exertion occurs such as exercise, walking, etc.
The intensity of these sensations is directly effected by
movement, enthusiasm, etc.  The only time they do not
bother me is when I sit still, like a statue.
I can feel the arrythmia pulses all the time and they
are especially uncomfortable at night, when often
I am awoken by their intensity.
       I have seen several cardiac electrophysiologists with
differing input.  And, I was all set to get a catheter
ablation but at the pre-op meeting, the doctor informed
me that it was highly unlikely that the above symptoms.  
are being caused by this arrythmia even though my
case is considered "rare."  This was quite a surprise
since I had seen him previously with no mention that it wouldn't help me.
  Any input you can offer including what options do I have?; Is there
a different type of cardiologist or doctor that I need to see; if the arrythmia isn't
causing my symptoms, what could be?
   Thank you very much.

[selim741]

I just had a pac ablation 3 weeks ago. Unfortunately it was not successful!!!! i have 20,000 skips a day. its horrible. just like yours. I had it done by Dr. Winkle top ep in the world at stanford. He said it was coming from the his bundle and that if he burned it, i would wind up with a pacemaker.

he want me to try multaq. anti arrytmia medication. don't think i will do that. i feel your pain.

[Gardengal456]

    I appreciate your feedback and especially, your empathy.
RE: Flecanaide... they do use it to treat arrythmias (usually a
hospital stay is required) but one of the EP docs I saw gave me a really
small dose to take at home. After one night on this medication, I had to stop
it because it caused mild tacchycardia.
    I take no meds at all for these 24/7 PAC's.  I, too, find it really strange
that these symptoms can't be explained by the PACs since there is
a clear cause and effect (in my experience any way.) Meanwhile, hopefully
the heart specialists I see over the next two weeks will offer me an explanation
and more importantly, a solution.
  
    

[is_something_wrong]

Wow, that's quite a lot of PACs!

I can't even imagine how you feel. On a bad day I get about 100 PACs and I feel like going crazy. I can't argue with your cardiologist, but I've never heard of someone getting PACs treated with flecainide. It can cause side effects, and if it doesn't work anyway, you should probably consult with him and ask if you can stop using this (NB! only change drugs after consulting your doctor!)

The question if ablation works or not depends on the morphology of your PACs (where they come from, if all origin from the same spot, etc). If your PACs origin, say, 100 different places, you cannot do 100 ablation procedures. If they origin from 1 to 5 spots, those spots can be destroyed.

I find it strange that your symptoms cannot be explained by almost 30.000 PACs. Of course you can feel them and you are bothered by them. I guess your symptoms matched your PACs on your Holter tests.

If everything else fails, and your life is ruined by PACs, your doctors may consider ablation of the His bundle or AV node. You'll need a pacemaker the rest of your life, but for someone (especially those bothered with atrial fibrillation that doesn't go away with ablation) it's possibly an alternative. In your case it seems a bit dramatic.

Best wishes!

[Gardengal456]

Hi Jerry,
  Thanks for taking the time to respond to my question.
None of the EPs I saw said I'm dealing with AFIB but the
word 'flutter' wasn't mentioned.  I've had three holter monitors
and many EKGs all showing the same result.
   I agree that a better explanation is needed.  On Tuesday,
I'm seeing another cardiologist in the practice of the EP
that de-scheduled the ablation. (The doctors are at the #3 rated
hospital in the country for heart matters.) Then mid-may I'm returning
to see another EP that gave me a different perspective.  Meanwhile, my situation continues get worse and I'm very concerned.
  

[Jerry_NJ]

That sounds like a large number of PACs... was the word fibrillation or flutter ever mentioned?    I think these are way above 28,000 and have other markers/identifiers.  

I can't think of any specialist better than an EP, which you have consulted.  I don't know what could be done about it, but I think you need a better explanation of why the ablation was aborted/de-scheduled.  Ablation is used to treat fibrillation, flutter and PACs, subject to diagnosis... I am not saying I know better than your doctor(s)