Flecainide for VT

[Prince123456]

Hi, Is anyone taking Flecainide for VT ? I have been suffering with PVCs for the last 3 years. I’m currently taking 10mg of Nebivolol which don’t seem to be working. I have previously taken Varapamil and Bisoprolol which didn’t work either. My EP has suggested trialing Flecainide first before going down the lines of an ablation.

[Malayabalaya]

Hi Prince123456 I took Bisoprolol in increasing doses then Verapamil neither of which made any difference to the PVCs.Then in November I took Flecainide 100mg per day. Noticed an immediate improvement in PVCs but towards the end of a dose they reappeared so for 2 months I’ve been on 200mg and I rarely feel a PVC. It’s been a great success for me and hope for you too. Still on a list for ablation but wondering whether just to stay on the Flecainide. Good luck

[Prince123456 in reply to Malayabalaya]

Hi. Thanks for this info it sounds encouraging I’m happy it worked for you, I’m going to be honest I’m scared to death of Flecainide reading how it can cause visual problems with peripheral vision. My EP said to try it first if it doesn’t work or if I get any nasty side effects then an ablation will be on the cards. My PVCs are multi focal with the majority coming from the Left Ventricle

Do they know what is causing your PVCs ?

[Malayabalaya in reply to Prince123456]

Hi I think my PVCs originate from the right ventricular tract but close to the wall of the left ventricle. Cardiologist fairly confident that ablation would be successful and said it doesn’t matter that I was sometimes in bigeminy,sometimes trigeminy, sometimes every 5 beats etc. on last Holter it was 22% of beats. I’m not aware of having any side effects from Flecainide and very much hope it works for you. Do let me know!

[Malayabalaya]

PS I would like to know why Flecainide has been so successful whereas the other drugs didn’t work. I understand it’s a sodium channel blocker but don’t know how that translates into helping some and not others. Wonder if the Cardiologists know?? I will ask!

[Prince123456 in reply to Malayabalaya]

Flecainide works by blocking the Nav1.5 sodium channel in the heart, slowing the upstroke of the cardiac action potential. ... This thereby slows conduction of the heart muscle.

Can I ask how long you have been on this med for and what dose are you on ?

[Malayabalaya]

Hi again I’ve been on it since November 2021 ie nearly 5 months. Dose was increased from 100mg per day to 200 per day in January which has completely stopped the PVCs. I understand max dose is 300mg per day but hoping I won’t need that

[Prince123456 in reply to Malayabalaya]

Hi, my EP said he would put me on the lowest dose but I forgot to ask him what that is. I believe it’s 50mg. I’ve made my decision if the lowest dose doesn’t work or if I get any nasty side effects then I’m stopping taking them and I’ll wait for an ablation. The PVCs are soul destroying and so very unpredictable in my case not brought on by exercise I can be just lying or sitting down and they just appear for know reason, I don’t drink alcohol I don’t smoke or take any drugs I dont even have caffeine it’s so frustrating, I would rather have tooth ache than these ectopics and we all know how painful toothache can be. Lol

[JKJLH in reply to Prince123456]

Hi there I am a 46 year old lady, previously fit, healthy and very active.

I have been taking a combination of flecaneide (50-150 mg) with Bisoprolol (10mg) for the past 18 months for PVT and non sustained VT. I found flecaneide really successful for my treatment, no ectopics, dizzy spells due to exertion.

I also had an ablation May 2021, in the right ventricular outflow tract.

People’s experience of ablation is wide and varied. I have found the recuperation period tough, but I am now eleven months on, weaned off all but 1.25 mg of Bisoprolol, and slowly but steadily increasing my exercise regime. I have gone from having very significant abnormalities and a very heavy burden of arrhythmia to between 5-10 ectopics over a 48 hour period. My choice was stark, you need to have an ablation, and stop all exercise, reduce stress to a bare minimum. Whatever they found on the ECG worried them greatly and drugs alone was not an option.

I started on Bisoprolol, built up to 10 mg a day, and flecaneide introduced on 50 mg per day. This kept me arrhythmia and ectopic beat free.

Whatever you decide regarding the ablation, take your time deciding and weigh up all the options. The technology is amazing and the team around me were fantastic.

I am really hopeful that my life can return to normal, or as near normal as possible. But the recuperation period for me has been the most challenging. However, the ablation was a success and I see it as saving my life.

Hope all goes well with the introduction of flecaneide.

[Prince123456 in reply to JKJLH]

Thanks for this. My VT isn’t caused by exercise I have now started on my Flecainide 3 days in 50mg twice daily they seem to be working for now. My ectopics are coming from the left ventrical. Can I ask how long your ablation took to do and how many spots did they ablate and what did you find so difficult regarding the recuperation of the ablation ?

[JKJLH in reply to Prince123456]

Hi,

My procedure took approximately four to five hours in total. The main challenge was that they weren’t getting enough readings, or the probes weren’t close enough to the source as they originated from the septum.

When I had a shot of adrenaline I went into ventricular fibrillation, I’m going to be honest that frightened me, but I didn’t lose consciousness and didn’t have to be defibbed. I then had to rest for 30-40 minutes until they could go in and ablate.

Post the ablation I went into VT twice but my heart went back into rhythm on its own.

Once home, which was the same day, as all my stats looked good and were back to normal, I did find it painful and I couldn’t do anything for the first week.

Progress has been slow, I had three visits to a and e within the first three months, put back onto all the drugs, and lots of support from the hospital cardiac rhythm team.

Since then I am feeling much better and able to do more and more. I am now off flecaneide and just one dose of Bisoprolol to drop. I have about 5-10 ectopic beats over a 48 hour period.

I think my experience is very different to others, part of that may well be my body’s reaction to the procedure, drugs and just feeling imbalanced. The fatigue is still there, residual pain but my condition compared to pre ablation has improved vastly, just the rest of the body that needs to catch up!

I completed a 6 km walk a few weekends ago, no chest tightness, dizzy spells or palpitations.

The procedure has been deemed a success.

Unfortunately, I contracted covid whilst on a phased return to work, and now I have long covid - so it is hard to differentiate between cardiac recuperation and long covid! During covid, I had all the normal symptoms, but my heart rhythm, BP remained unaffected.

Being through all of the above has been challenging, both mentally and physically, but I am confident that I will continue to improve and get back to normal me.

Whatever decision you make, speak to the cardiologist and share your questions and concerns. Everybody’s experience is unique. I felt so well supported by my cardiologist, who was amazing, and the lovely nurses who took such great care of me.

Take care.

[Prince123456 in reply to JKJLH]

Hi, Thanks for taking the time to explain your story it sounds like you’ve been to hell and back but thankfully you are on the mend and will continue to improve.

My ectopic burden of PVCs was a lot greater than yours I was averaging 18 per hour which was making me feel extremely drained it was effecting my sleep I was lucky to get 3 hours sleep a night. I have been taking the Flecainide since 05/04/22 so only been on them 3 days and the ectopics have reduced to just 1 per hour so they are working for now. I’m on the minimum dose of 50mg twice a day. Hopefully the Flecainide will continue to work so I don’t need to go through an ablation. If I new the ablation would work I would of chosen the ablation but the thought of going through it and it not working depresses me.

[JKJLH in reply to Prince123456]

That sounds awful, a lot of ectopics per hour, no wonder you were so drained.I hope the flecaneide continues to work for you, and you get to live a normal life again.

It is a tough condition, until you’ve lived through it it’s hard for people to comprehend.

Good luck.

[Malayabalaya]

Hi 50mg twice a day is the usual starting dose but often it has to go up to 100mg teice a day as in my case. Certainly worth giving Flecainide a go. I feel normal again having been on it. I agree with you the PVCs are a complete pain in the whatsit and are random. Hope your trial goes well

[Prince123456]

Thanks. I will keep you posted when I start them fingers crossed they work 🙂

[justdee]

I started out years ago with PVC’s. They unfortunately turned into AFib about 7 years ago. I decided to undergo an ablation after having a cardiac loop implanted for two years which recorded all activity my heart was experiencing. I am doing much much better but I do take 50mg Flecainide twice daily. It helps me so much.

[Prince123456 in reply to justdee]

Thanks for that justdee I’m so glad for you that it helps. I really hope it’s going to help me otherwise it looks like an ablation the thought of which terrifies me

[Prince123456 in reply to justdee]

I forgot to ask. Was the ablation a success ? Do you still take Flecainide ?

[justdee]

I would say it was a success. There are times where I feel like I have a few episodes…if I eat too much or have caffeine. I still take Flecainide. I’d rather take a pill daily and not feel the irregularity of a heartbeat. The ablation was pretty rough on me. I really don’t want to go through another one.

[Prince123456 in reply to justdee]

Yes i would definitely rather take Flecainide than suffer the ectopic beats they are draining me.

[justdee]

I hope Flecainide helps you! I was so nervous when I started taking it. But I don’t notice any side effects. I was only 45 when all this started happening.

[Prince123456 in reply to justdee]

Im 49 mine started when I was 46 but I started feeling unwell a few months before the PVCs appeared . I would wake up in the middle of the night sweating and feeling sick in the morning i was also very lethargic then came along the PVCs. I believe I must of contracted something like myocarditis but it was never officially diagnosed at the time, my cardiologist said he couldn’t rule it out. I have had all the tests and scans done my ejection fraction is 57% LV and 65 RV. I have a normal heart.

[justdee]

I’m so sorry you’re feeling terrible. I hope you are able to find and figure out what is going on with your heart. Have your worn a heart monitor or considered having a Cardiac Loop implanted? I know how upsetting, frustrating and tiring it can be. It effects your whole life in every possible way. I too have been told I have a healthy heart. Give the Flecainide a chance and hopefully it will help you.

[Prince123456 in reply to justdee]

Hi. I have an ICD implant they know the majority of my ectopics are coming from the Left Ventricle i had a consultation last Tuesday with the EP he said he was going to write to my doctor to suggest a trial on Flecainide. If the Flecainide doesn’t work then it’s looking like an ablation. How long did it take to do your ablation and was you awake or put to sleep ?

[justdee in reply to Prince123456]

My ablation took a couple of hours. I was not awake. I spent one night in the hospital because my procedure was done later in the afternoon. After surgery my heart was not happy. I had AF for hours afterwards. My Electrophysiologist told me my heart was “pissed off”. It did take days for me to feel better. It will be five years this coming June. I’m glad I did it, but believe me I was so scared.