Unsuccessful Ablation

[Georgia1989]

Hi Everybody, I am 31 and I have recently has an ablation to correct Atrial Tachycardia unfortunately the procedure was unsuccessful, im now on strong anti-arrythmic drugs with horrible side effects. I constantly live in fear of having more arryrhmias every time I have an ectopic beat I feel as though I'm going to die, I don't like being alone anymore through fear of something happening. Is anybody else experiencing this and how do you cope with it? I have been told by my GP and a nurse that Flecainide which I'm on for my Arrythmia is really not good but my EP has prescribed it to me. I want to stop taking it or wean myself off but I'm so scared and don't know what to do anymore.

[meadfoot]

Sorry to hear you are struggling. I understand completely as I feel the same as you. I have flecainide as pill in the pocket so I am not taking it daily only when I feel arrhythmia striking. Perhaps you could ask your EP if that route is suitable for you.

I have extremely fast AF and am also on a daily beta blocker, my EP says I must be on a beta blocker ongoing to work alongside the flecainide. We are all so different in how our arrhythmia affects us so it’s is important you have a good rapport with your EP and work together as a team. I have no medical expertise whatsoever and can only respond with what my arrhythmia routine is.

I hope you can find a route which eases not only the physical impact of AF but equally importantly the emotional and life impact it is clearly having on you. It’s scary I know. Hang on in there you will get back on track. Best wishes.

[Georgia1989 in reply to meadfoot]

Hi, Thank you for getting back to me, I am slowly starting to realise that lots of people feel this way and I'm definitely not alone. I have a call with my EP next week to check how I've been since the ablation so I will ask him about the Pill in the pocket flecanide, how often do you need to take it if you don't mind me asking? I have been told I have Atrial Tachycardia not AF but I'm not sure what the difference is to be honest and I can only find alone information about flecanide with AF but I will ask my EP about this too. Have you tried abaltion yet? Best wishes, G

[meadfoot in reply to Georgia1989]

I have atrial tachycardia which in my understanding means my heart rate goes at a very high speed for example mine goes 250 to 300 beats per minute.

I also have supraventricular tachycardia and I can’t say I know the difference between to two conditions, I have AF too for good measure.

My heart can require pill in the pocket flecainide on average say once a month sometimes more sometimes less, I cannot predict it, it seems totally random. I have been told if I am needing it often and more regularly then I should go onto a regular daily dose. My EP, who I know to be one of the best at a top London hospital is happy for me to know how and when to take it. I always listen to his advice and follow it. He insists I take a regular beta blocker daily. Hope this helps.

[jameshobby]

Hello Georgia,I had a failed ablation for atrial tachycardia (didn’t get them on the day would you believe) just like you. I tried Flecainide which worked ok for a bit and then started to make things worse. It gave me a headache too. I stopped taking it. I couldn’t take beta blockers because I get asthma so for the last few years I have been taking a low dose of verapamil. This is not perfect but it certainly helps and it also seems to make the ectopics less noticeable. All I can tell you is that I am so bored with the whole thing that I really do ignore them now. I have had ectopics for over forty years and I’m still here swimming, jogging etc, I can get thousands a day on a bad day.

If you are fundamentally healthy and your heart is structurally sound, I advise you to stop looking to cure this incurable and unfathomable issue, stop angsting and just live your life. Sleep well, do sport and limit the alcohol.

Good luck to you!

James H

[Georgia1989 in reply to jameshobby]

You are so right in what your saying. I feel everyday is a step in the right direction and like you say trying to ignore these arrythmias is definitely what I need to do. It seems as though no matter how many people tell me I have nothing to worry about I still have that voice in the back of my head of fear and anxiety. I just hope that as time goes on that voice gets quieter. I will see how I get on with the Flecainide and maybe as someone has suggested see if I can get a pill in the pocket so I only take it when I feel an episode coming on. Fingers crossed and thank you so much for the advice. G

[Peony4575 in reply to Georgia1989]

Hi Georgia sorry you are suffering . When I was 28 I started with supraventricular tachycardia after a particularly strenuous aerobics class . I had two small children at the time, was living 300 miles from my family, there were no mobile phones and I was terrified I was going to die in front of my children and lived in fear of the next attack . I developed a full blown anxiety state . Never took any drugs for it and I grew out of it when I was about 32 . Ruined my life . My son developed it at university , didn’t bother about it, scared the life out of me he would let it go on for days . He grew out of it too. He is 38 and I am 65 and we re both still here . I wish I could go back give my younger self a hug and say the anxiety isn’t worth it . Really recommend a book called Badass by Gerry Verschaeve (Amazon). He has really good advice on dealing with amongst other things cardiac anxiety . Give it a go you have nothing to lose but your anxiety

[drooi]

Hello, sorry to hear about your woes. I totally understand. I have been on Flecainide 125mg twice a day for almost 2 years now. What a difference it made to my arrhythmia, and my quality of life. I still get some ectopics but nothing to the extent that it made my life miserable. No AF or tachycardia now. The good thing is, I don't get any side effects from the Flecainide, which is what you wanted to know. Sometimes we have to take a leap of faith, and go for it. I'd say, go for it! Good luck!

[sarniacherie]

I was on Flecainide for a few years but as soon as my 70th birthday was on the horizon the cardiologist took me off them, the reason being my approaching milestone birthday. Reading posts on here, there seem to be several people over 70 on this drug, so I am not sure why he took me off them. Arrhythmia can be very worrying. You can feel really ill with it and get scared that this might be it. Over the years I have tried to keep calm during these episodes and I don't get so anxious now. I still don't like them, I never will, but trying to relax has helped. Speak to your EP and tell them how you feel. Hopefully, they can put your mind at rest.

[MoundMan]

Hate this for you. Horrible. Circumstance for me far better so far than yours currently. Have the slow afib version. Now realize since childhood. 1st ablation 3 years ago followed by flecanide worked pretty well for a couple years. Then returned to slow afib. 2nd ablation last summer along with a cardioversion couple months later followed by daily dose of rhythmol has been the right match. Have more energy than in years.

[MtnMike]

I'm on the other end of the age curve from you @75. I was prescribed Flec by my Cardiologist (2nd one I consulted) after being diagnosed with PVCs. Having worked for 25+ years in the pharmaceutical industry I knew a "black box" label was bad news and I was very hesitant about taking the drug. It helped with PVCs but the side effects negated the benefits and I simply quit taking it. What I learned along the way is that our conditions are not life threatening but they can indicate a more serious underlying problem. Often, addressing underlying causes of stress and anxiety can reduce or eliminate our condition. If I were in your situation I would be seeking a more supportive provider and additional diagnostics to rule out serious underlying conditions.Wishing you the best!!

[Deary63]

Hi Georgia You poor thing I feel your pain , been there got the T-shirt ... mine all started when I had my third child I was 31yrs old .. anxiety makes everything ten times worse , but it didn’t matter how many cardiologist I saw private and nhs I wouldn’t believe them that my ectopic beats and racing heart which kept me awake every night for years was to going to kill me . .. I still get like it now and iam 68 ..

I was taken into hospital for an ablation but they couldn’t bring on the missed beats or my heart to race, that was years ago ...

One cardiologist put me on flecainide when I was in my 30’s it did help stop the missed beats .. but I used to feel worn out also .. so I stopped taking them .

But a few years ago I had bad turn while I was out , thought I was going to black out as my heart seemed liked it stopped and fluttered for a minute although it felt liked longer ... the EP at Barts Iam under told me to take flecainide just when I have a bad attack ..

So I have them on hand just in case , it’s only low dose 10mg I have had to take any yet! I’ve just started listening to the Calm App when I go to bed it seems to be helping me to calm down , hence stop my heart doing all these things to frighten the life out of me .

I do hope you can find something to help you ... your not alone , it’s so common .. but this group is fantastic for making you feel better ..

Keep us updated on how your doing take care Sue

[Georgia1989 in reply to Deary63]

Hi Sue, Thank you so much for your reply. Your situation sounds similar to mine obviously you've been having to deal with this a lot longer than me though. I actually have a check up with my EP tomorrow over the telephone so I am going to ask him about Pill in the pocket Flecanide. I have only been on this forum for a little while but it has really helped just realising there are so many people on the same situation as me and they are having similar thoughts and fears. At first (3 years ago) I was told that I was having panic attacks and there is nothing wrong with my heart and it was all in my head but now it has been found that I do have Arrythmia and one that can't be fixed unfortunately, My EP found my Arrythmia but had to abandon the ablation after 4 hours as the Arrythmia was too close to my phrenic nerve and he won't even attempt to try again. So this is something I just need to manage and I feel like I am getting there just takes a long time. How do you find you deal with it now compared to when it started at 31? Thanks, G

[Deary63 in reply to Georgia1989]

Hi Georgia how did it go with your EP ??? Any joy xxx

[Gingerspice18x in reply to Deary63]

I’ve recently had my first child I am 18 and noticed you said yours came on after your third was this due to pregnancy or labour or just something that came on randomly because my first episode happened during my c section and hasn’t been the same since and wondering how this has happened

[Deary63 in reply to Gingerspice18x]

Hi

To be honest I used to feel a flutter in my chest when I was in my Early 20’s but thought nothing of it....

I did wonder back then if it was my hormones as I used to get them really bad when I had my periods!,, I mentioned it to consultant I was under at Barts and he did look into it, but they didn’t think it was hormones ....

I wish I had a answers for you , I’d liked one myself 😃 but all I will say is get a 24 hrs or 48 hr tape to check it all out, sounds like ectopic beats which horrible and scary , but the more you tune into them the more it’s goes on, I do know that! But like I said I’ve had them for over 30 odd years and still here 🤞🏼

Did the hospital look in to them when you had your baby ?

If I can help you in anyway...please ask ..it’s good to talk 😊

Take care

Sue

[Gingerspice18x in reply to Deary63]

Hi Sue, I’ve had several tests which haven’t showed anything wrong but it was ever since my c section when they said I had an SVT where my heart rate hit 210bpm and since then it hasn’t been the same I feel thuds in my chest and chest pain which I have been to A&E a million times for and say it’s nothing I’m waiting to see a cardiologist and currently taking Bisoplorol as all through my pregnancy I was tachycardic and it never went down after birth

[Deary63 in reply to Gingerspice18x]

That’s good your seeing cardiologist, this is the thing that drives you mad when they say it’s nothing to worry about 🤨 it’s such a awful feeling.... good thing is your very young and they can do so much more for all this now a days....

So the bisoplorol has helped the racing ? That’s good....

I don’t get the racing so much it the missed beats and fluttering like my hearts stopped that gets me down...

Please keep in touch let me know what the cardiologist says...we are all in it together ...😃

[Gingerspice18x in reply to Deary63]

The bisoprolol is definitely helping although for the first two hours of it when it kicks in I feel as though I’m gasping for air but then for the rest of the day I’m fine but I’ve noticed so many more heart palpitations where it feels like my heart thumps for a second then back to normal but yes I will let you know what the cardiologist says I just feel like my life is over now and it’s only just started

[Deary63 in reply to Gingerspice18x]

Oh darling your only a baby and Iam sure you are very healthy young girl too... I do know just how you feel honestly , the cardiologist will sort all this out believe me, you might need an Ablation to stop all this....I’ve been in for one of these few years back, they couldn’t bring on the missed beats, just my luck....but the hospital has always been there for me...as they will be you ...x

[Rostom]

Hi Georgia

Everyone is different in the way they respond to drugs but it may help if I tell you that I have been on Flecainide (100mg x twice a day) for over twenty years now. I do not have any side effects.

I still am aware of my tachycardia (PAT - Paroxysmal Atrial Tachycardia) from time time, especially if sitting quietly reading or watching television etc. I also have occasional bouts where I can't quite catch my breath but they are fleeting.

My experience of Flecainide (which I understand to be an ancient drug but used because it works well) is a positive one. Please don't dwell on all the possible side effects listed in the accompanying leaflet - the manufacturer is obliged to list them but the chances of your having them is very small. If by chance you did, you know what they are and you can seek further advice but this is really really remote.

Hope you feel better soon.