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496562 tn?1209715286

Ablations done- what are my other options?

At the age of twelve (I am now 19) i had a cardiac arrest due to electrical complications in my heart, I now have an ICD and Last year my electro-physiologist decided that it would be worth trying an abaltion, the first one had no effect on me, and the second was even more painfull and metephorically heart breaking as that one failed to have any effect either. I have a prolapse mitral valve and am on flecanide for my constant palpatations. My quality of life is poor, and i feel as though I am missing out of being a teenager, I am constantly exhausted, suffer from horrible nightmares as a side effect of the flecanide, and despite being on the drugs i still have horrible heart beats. I was wondering if anyone could think of any other options for me? whether it is an increase of drugs (i am currently on 250mg of flecanide) or another operation. right now i would just like to enjoy today.

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21064 tn?1309308733
Hi RoseBam,

Welcome to the Heart Forum!  Please make yourself at home, browse the archives and the curent posts, check out the topics and feel free to ask questions.

I'm sorry to hear that your dealing with all the arrythmia issues, especially at such a young age.  I don't know if this will help or not, but when I was having thousands of pvcs, I was put on flecainide and also had weird dreams!!!  My doctor switched me to rhythmol and it was much better regarding side effects.

connie
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187666 tn?1331173345
Do you know which arrhythmias you still have? If you have an ICD perhaps you have some ventricular problems. If we know what arrhy's you have, then those folks with the same thing can help a bit.
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496562 tn?1209715286
i have Tachycardia, ventricular fibrillation and SBE prophylaxis which i dont even know what that means i just know they all suck! hahaha.
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496562 tn?1209715286
thank you so much, I will ask my EP about that drug asap. for all we know you could have just changed my life :)
take care.x
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496562 tn?1209715286
my only worry is that I live in Newzealand, and certain drugs are subsidised by the government, so flecanide costs me about $3NZD a month, as aposed to about $100NZD, i will have to see if rhythmol is approved, there may be some reason I am not on it already. This website is such a good idea, i think it is amazing how much people know about cardiac issues, and how much i dont know, it may be because this has always been a problem for me, but it is very educational, and its lovely to know i am not on my own.
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21064 tn?1309308733
Well....HELLO from across the ocean!

In my case, the doctor chose flecainide over rhythmol (propafenone) because flecainide is only taken 2x a day and rhythmol is taken 3x a day.  She felt it would be less of a pain for me to only have to remember taking the medication twice each day.  I hope you find the right combination for you and that you get rid of the crazy dreams!!  UGH!!!

SBE prophlaxis refers to preventing bacterial endocarditis and having to take an antibiotic prior to dental procedures and some surgical procedures.  In the U.S., the guidelines have been revised and many of us no longer need the antibiotics.  You may want to ask your doctor if the guidelines in NZ have also changed.
http://www.americanheart.org/presenter.jhtml?identifier=3047051

I took antibiotics for about 30 years and was thrilled to hear about the new guidelines.

Let us know what the doctor says.  This is a great site with many, many nice people so post away : )

Connie
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