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581460 tn?1218055259

flecainide & Pvcs

I saw an elctrophysiologist recently and she gave me two choices:
flecainide + beta blocker or an unsure ablation procedure which she really advised not to do..... I have very frustrating PVCs and nonsustained VT, I am a 22 year old female....

I chose to try the medication... Can someone tell me a little more about their experience with this medication?
10 Responses
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Avatar universal
Hi Rach,
       My pvc's started in February out of the blue.  I had up to 12,000 a day.  My cardio. put me on flecanide and it really helped.  As it wore off the pvc's would return with a vengance.  We changed the amount and times of the medication to help with this.  I went from 100 mg every 12 hours to 50 mg every six hours.  Over time I had to add more and more flecainide and it stopped working.  I had a run of tachycardia and pvc's and passed out in a doctor's office (my daughter had surgery) and ended up overnight in a hosptal.   It became necessary for an ablation.  I had it done 3 and a half weeks ago.  My experience was with a Michigan heart group, and I would NEVER go to that doctor again.  He did NOT give me pain killer until AFTER he started the ablation procedure (at the end of the EP study) and it was excrutiating as I was fully awake.  He burned me for three minutes to a degree of "50" whatever that indicates.  I suffered with burning and chest pain/ache for two full weeks after and I am still achey and have chest pain when I try to walk.  I still have problems breathing as well.  The pvc's have dropped substantially and I have only taked 100 mg of flecainide since the procedure.  Some people say they will continue to improve as the heart scar heals.  I have a friend who had a very positive ablation experience at Cleveland Clinic and said she had no pain at all, so I know that my situation may not be the same for everyone.  I would say find the best doctor your insurance will cover. . . Cleveland. Mayo or Uof M.  Don't mess around with a cocky local doctor.  I think I would be much better off if I would have trusted my instincts and driven five hours to Cleveland.  I will next time if it is needed again.  That is my situation.  I can keep you informed as I heal and let you know if it ends up a success story for ablation. Take care, sleep when you can and good luck.  Val46
Helpful - 0
Avatar universal
I have been taking Flecainide for 13 years 150 mg`s twice a day.  It has helped me a lot, I am not able to have Albation or Myectommy (sorry about the spelling).  I have a ICD and have not been shocked since starting Flecainide 13 years now. I still have a few PVC`s but nothing like before.  Good luck with your choice !
Getting a second opinion is a good idea always.
Helpful - 0
21064 tn?1309308733
I used to have very frequent PVCs and nsvt.  For years, it was not a problem (other than frustrating and uncomfortable).  A few years ago, I developed pvc-induced cardiomyopathy as a result of frequent pvcs.  I was put on flecainide, twice a day, but had uncomfortable side effects (some people tolerate it very well).  My doctor changed my RX to propafenone and it meant taking a medication 3x/day.  The side effects were not as bothersome, but because she said I would be on it for the rest of my life, I revisited the idea of an ablation.

After 7 months of taking the anti-arrythmics, I went in for an ablation.  My PVC frequency dropped from 20,000+/day to 6,000.  I was thrilled, but the doctor suggested they try and ablate another predominant foci.  I had the 2nd procedure 3 months later, and I have had very few pvcs since (2003).  I no longer need to take the medication and feel so much better.

As for the procedures, I was in a state of conscious sedation and have very, very little recall of anything.  I had my ablations done in Cleveland, but not at the CC.  Why does your doctor advise against ablation?  Are you highly symptomatic?  I was multi-focal, so it was a little tricky, but no regrets.
Helpful - 0
581460 tn?1218055259
My docs really want me to try the meds first, and in the case of them not workign will i be a candidate for ep study and ablation. Im actually on Flecinide and Atenolol right now and still feel no improvement. Do you know how long it takes for flecinide to kick in?
Helpful - 0
21064 tn?1309308733
For me, it worked within a very short time.  I was in the hospital and could see immediate improvement on the monitor.  How long have you been taking the meds?
Helpful - 0
86819 tn?1378947492
My doctor advised against ablation for NSVT saying that it is more likely to make matters worse.  He did offer an EP study saying that it would be prudent to know how "inducible" VT is; however, he (and two other highly qualified EP's) judged my risk to be reasonably low and gave me TOPROL.  This beta blocker seems to work well for me. Since NSVT was the end result of an ablation for SVT,  I was sort of on page with him right of way:  not real eager for another one.

Boy I cant believe this story about no pain killer during an ablation.  That has got to be an error doesn't it?  I was under for mine.  BTW has anybody else seen pictures of cardiac tissue subject to RF ablation?  The one picture I recall essentially shows charr'ed (black) tissue.  I was wondering if this is what typically happens, and at what temperature (did someone say 50C is typical)?
Helpful - 0
21064 tn?1309308733
Hey Bromley!

I looked at my ablation reports and only one of them has the temperatures listed...BRRR.  There were 12 burns and the temps. ranges from 32-50.

I can't imagine having gone through the RFAs without anesthesia.  I was on the table for 6-7 hours each time.

I'm glad the toporol is working well for you : )
Helpful - 0
Avatar universal
I had a heart ablation for PVCs in march 2015. I felt great for 6 months, and now they r terrible again. I take metropolol and its not helping. Heart doc said I need another ablation on left side of my heart, but my left ventricle is swollen, and mitral valve is leaky. My first ablation took 7 hours and they burned 40 spots, I had pain medication, but was awake for the whole thing, cause u should be awake cause they fill u with adrenaline to find where PVCs r comi g from. Idk what to do, ask for flecainide or get another ablation???
Helpful - 0
1 Comments
PVC/VT are difficult to map and ablate manually as you experienced.  Your EP must be very skilled to offer a second procedure.  If you can find a center that combines a skilled EP with stereotaxis magnetic navigation, the chance of success increases significantly along with much lower complication risks.  Also operator fatigue becomes important as a procedure drags out in time and the magnetic systems cuts down on procedure time a lot because of highly precise mapping which is much harder to get on a beating heart with manual catheters.  There have been a bunch of studies published in AHA recently that show this at top centers.
Avatar universal
Val46  I know you haven't posted in a while, I hope you are doing well.  I see a physician out of Michigan Heart Group Troy and was wondering if that was the group you saw, actually Heart Rhythm Group which is part of the Michigan Heart Group.  It would interesting to know what doctor did your ablation in case I would need that done in the future.  

Helpful - 0
Avatar universal
I feel very well versed in Flecainide - I have been on it for 32 years (yes you read that right) - I was in the original FDA trials for the original name brand Tambocor as a teenager. It is the only drug that has worked for me - I call it my little miracle.  I also have an AICD for the past 22 years just in case - but without FLecainide (I take around 300 mg per day) I have about 23,000 PVC's with sustained runs of VT of up to about 70 pvc's.  It can upset your stomach, make you tired, or cause vision disturbances - during the day I break the 100mg in half and take 50=50=50=50 every few hours and then 100 at night, but considering the alternative I will take it!
Helpful - 0
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