(seeking some advice) PVC's, Flecainide, and possibly another ablation.

[texasfishergal1]

I've been lurking around here for a while. BACKSTORY-- March 2019 bigeminy, trigeminy. I was offered Flecainide but was scared to take it because of all the stuff I'd read about. I ended up with an ablation in June of 2019. No meds everything was fine until about a month after the ablation, which I ended up back in bigeminy, though they weren't quite as forceful and scary feeling. My electrophysiologist pretty much begged me to try the flecainide, I did and within 30 minutes all was good! Downside--- I feel like crap on the med-- I'm tired all the time and my hair is falling out. I feel like I just don't get any rest. Not sure if this is a side effect from the med, or my something else going on. I've had tons of ECG's, Stress tests, echos and my cardiologist tells me all is well and don't come back for another year.

I've been raising my 12 YO nephew and we recently lost his dad due to covid, he was 45 YO. I had held out hope that his dad would get it together and come and get his son and they would be a family. (my kids are grown and I'm a little tired) It never happened. So here I am, raising another kid and pretty much feeling sorry for myself because I had other plans. He's a great kid, but has an intellectual disability along with ADD. He's a bit of work, something I didn't go through with my own.

About two weeks after his dad died, my heart started acting crazy again. A couple of times I thought I was going to pass out. I called my EP and I'm now wearing a 30 day monitor. I've been instructed to STOP (not wean) the flecainide five days before the 30 of this month and be on the table for another ablation.

Should I? I'm so scared of these things, but I'm also scared of being on the flecainide and I'm scared of the ablation.

I'm so tired of feeling like I have no other options.

Thanks for listening and I know that you all are not doctors, but I just need some other opinions from people who've dealt with the med and the ablation stuff.

Thanks,

Tammie

[listerines]

Hey there, Flecainide does seem to have a relatively safe profile with many users but certainly sounds like that may not be the case for you (sorry to hear that). From the tone of your message you seem to have reservations about a second ablation... You could look to discuss other medication options with your EP as flecainide is certainly not the only antiarrhythmic out there - unfortunately all antiarrhythmics carry the potential for side effects (some more so than others - looking at you amiodarone).Have there been any discussions about trying cardioversion instead of ablation and keeping ablation as back up if cardioversion unsuccessful? Based on your heart exams you would seem to be a safe candidate for cardoovedsion.

You do have options though that could be discussed with your care team.

[Hidden in reply to listerines]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[irene75359]

Tammie, I don't have experience of ablations so can't give you any meaningful advice, but you have had such a lot of trauma in your life I am not surprised your heart is acting up. To lose your brother and then take on his child with special needs is a huge undertaking and has obviously involved many stressful changes in your life. And of course you are dealing with a bereaved twelve-year-old whose world has been turned upside down, this can't be easy for him either. I am hoping that this isn't something that you are trying to cope with completely on your own, do you have help from any other sources or agencies?

I use flecainide (alongside bisoprolol) as a PiP which has always been very effective for me and fortunately I don't suffer from side effects...at least from the flecainide, the bisoprolol is something else! There are many people on the forum who have used flecainide for years and it has been very effective at keeping their arrhythmias under control. I am hoping that some others will be along who can give you help about ablations from their own experiences. My own view is that at the very least you need a meeting with your EP to find out the results of the monitor and exactly what is going on with your heart before having another ablation.

Please come back and let us know how you are, on all fronts. Thinking of you.

[texasfishergal1 in reply to irene75359]

Thank you for your reply. I'm currently in counseling. It helps, but right now its just a lot going on. I will have certainly call my EP and see what the results are before I go in to the Cath Lab. It's just frustrating when you don't feel good and you want to feel good. Thank you,

[Hidden in reply to irene75359]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[HuntsvilleAL]

There are other drugs to try to help the arrhythmia. They all have side effects. As your doctor will tell you and I have been told, it is trial and error to see what works. I have been on Flecannide for over 40 years on and off and at times controlled the problem for years . No side effects for me. Have had two ablations in 14 years. After a while some of the meds do not work as well. After my last "touch up" ablation over 2 years ago, I started having etopics, some days better than others. But exhausting at times from the side effects. One day holter recorded over 1000. I am scheduled to have another ablation to see where these are coming from. New research has shown that having too many PVC/s and PAC's over a long period of time can lead to cardiomyopathy. For some folks, these may not be as benign as once thought. The good news is that the technology is constantly changing and experienced EP's are finding more success in fixing all types of heart arrhythmias. Suggest doing your own research then make a decision. It is always good to get another opinion, sometimes more than one. Has your Doctor suggested getting a Medtronic or other form of implanted heart monitor? I have one, so my EP knows exactly what is going on. Hope this helps.

[texasfishergal1 in reply to HuntsvilleAL]

Thank you. I may ask him about the Medtronic. It's just frustrating to go through this for the last few years. I did the research on Flecainide and scared myself to death! LOL Before my ablation in 2019 I was having 20k PVC's, that was off and on until the ablation and then I started the flecainide,

Thank you,

[saulger in reply to texasfishergal1]

Hi Tammie. Have you looked at food intolerance and a blood test for electrolyte imbalance? For some people it could be as simple as that, especially heart palpitations without AFib.Good luck. Saul

[texasfishergal1 in reply to saulger]

Not in depth, but I will now.

[saulger in reply to texasfishergal1]

Good luck. Please let us know if you find anything out.

[Hidden in reply to HuntsvilleAL]

Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[Hidden]

I'm sorry to hear of your loss, and how you are understandably feeling very tired at present. Please don't hesitate to contact AF Association for support & information should you need it: [e-mail] / 01789 867 502

[Davg7]

Afib kicks up the same heart hormones as anxiety does. And this is scary stuff. So is it anxiety from strange things in heart or feeling anxiety from misplaced heart hormones, yes and yes. If you go with flecanide very careful on dosage, exceeding maximum dose per 24hrs is very dangerous. It worked for me for several years until it didn’t. It’s also used off label for anxiety like stage fright. Hope you have a patient dr. Either way the scary feelings are real.

[texasfishergal1]

Thank you.