Arrhythmia Alliance
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What next after ablation?

Hi I just had ablation therapy 2 days ago. They couldn't trigger the SVT so they just ablated the extra pathway that they could see. The EP told me that it was unlikely to have cured it because they couldn't 'test' it without triggering the SVT. I came home the same day. But 2 days on I feel deflated and am constantly worrying that I'm going to trigger the SVT again. I'm even scared to walk up and down the stairs as that used to trigger it before. I just feel more worried & anxious now than I did before as I felt 'safe' on my tablets but now without them I'm scared to do anything.

Did anyone else feel this way after ablation and if so how long was it before you felt able to carry on as normal?

Thank you

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Hi contact the hospital & speak to your Arrythmia specialist they are great at reassuring you, keep asking questions or you will only worry more good luck!

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Thank you

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Hi I am really sorry you are understandably feeling worried. Give the Arrythmia nurse at the hospital a ring and talk it through. Try to relax it is early days, as you will know stress is a trigger. I had the EP study and ablation 3 weeks ago. I appreciate I am one of the lucky ones, they managed to trigger the SVT. I was very tired the first week and I think because we are told to take things easy, too much time to think so got a bit down. Because I have had SVT for many years and for quite a while like yours, it was persistent, I keep expecting it to happen and understand that scar tissue can form which can restart the condition. However I am staying positive and feeling ok at the moment. I went back to work this week. Give it a chance and see what happens. It may be a better result than you think. Good luck!

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Hi Maude

Thank you for sharing your experience it's reassuring to hear how other people have coped. I'm glad to hear that your ablation was more successful. Thank you Debbie

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Hi Debbie,

Last June I went for an ablation too. It also was unsuccessful. I felt so upset afterwards. Coming home I had a meltdown. I did not go back on the beta blockers. I just felt worse on them with cold hands and feet, to low a heart rate, and had absolutely no energy. I just said there is no way I will go back on them. Yes I do worry alot about when the next episode will be, Since last June I have had about 5-6 episodes. The last was last Monday and I had 2 episodes that day. That was new to me with 2.

They could activate my heart but could not find the irregulor pathway.

Nice to be the 3% of unsuccessful procedure.

I am hoping to having a second procedure done, but have to get off some anxiety medications, and that has been slow

He wanted to do it this month, but I postponed it as I am taking the slow route coming off meds.

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Hi there I think you are really brave going back a second time- I don't think I can go through that again. I have the same side affects with the tabs too, but I felt safe on them - I just feel vulnerable & dreading the svt starting again! I'll have to find a way of coping. Good luck with your next ablation I hope it works for you this time 👍

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I had exactly the same except my ablalation was for AF. They just couldn't trigger it so aborted without doing anything. They were very surprised so assume it doesn't happen that often.

My AF did come back but they tried me on various drugs again and found one that worked, so I'm OK at the moment.

Can you have a supply of your previous pills, maybe just as pill in th epocket as and when you need them???

Koll

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Hi Koll I'm sorry your ablation didn't work either. I have my pills at the ready just in case it starts up again. I'm not sure if I'll have to take them every day again or if I can just take them when I get an episode? Hope your AF is not too frequent. All the best Debbie

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Because every case requiring ablation therapy is so individual and unique it is difficult to my case will help yours, especially when you are in the 'unsuccessful' 3%! I have had 4 attempted ablations with only 2 where any effort was made to actually ablate due to the inability of the EP to trigger an episode. I have both bradycardia and tachycardia episodes - mostly the former which leave me washed out etc etc. I know my condition is not life threatening but is life disrupting. I have gotten over the anxiety symptoms and am able to live with it fairly comfortably. I do get out of breath frequently but still manage to climb steep gradients - with pauses occasionally. I am still relatively fit and healthy. I don't take any medications as they all make me feel worse so it was agreed I should not bother with them. I had a pacemaker fitted to reduce the times when my HR dropped into the 30s - it now only drops into the 40s but the pacemaker corrects this - eventually.

I am due to have one more ablation effort as the EP feels there is a chance of detecting the fault - but after that I have decided to stop there. At the moment I am trying a reduced caffeine diet and it seems to have a bit of a positive effect - but definitely not the solution.

Because I can identify and deal with anxiety better I do feel it has been of the greatest benefit - knowing my condition and how to deal with it without getting anxious means I do not exacerbate an episode when it occurs. If it is a bad one I do go into A&E where they are very supportive and reassuring - this only happens a couple of times a year - they know how frightening the episodes can be and, despite all the pressures they are under, they are more than happy to do the checks, monitor me for a couple of hours then send me home when I feel better - always saying do not hesitate to come in again if I feel I need it - I treasure them! This can also be a route to further treatment if they feel I need it - they always call a cardio-nurse to get their expert opinion before discharging me.

I wish you the best and agree with others who say do not stop to ask questions or pursue whatever avenues are available - I actually changed my EP because the first one gave up on me as he couldn't solve the problem.

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Gosh you are so positive & truly an inspiration. It is now a week since I had the ablation I have had a few flutters but nothing severe so far. The problem is that I am worrying about when it will happen as I'm certain it will. I felt 'safe' on the tablets but now I'm not taking them every day I worry more - even though I know I have coped & managed in the past. Before I was diagnosed and put on the tablets I could have bouts of episodes sometimes several in a day that could last up to two & a half hours - after which I would feel completely drained & sick! I used to think that I was going to die as my whole body would shake. I never went to A & E but after I was diagnosed I was told to ring 999 if an episode lasted more than 25 minutes. I did have an episode that lasted that long but I didn't call 999 as I was scared about that too!!

So I am going to try and manage without the tablets and take one if I have a bad episode as my doctor told me they will kick in after 30 minutes. I don't really want to take them every day as I do get side effects - easily tired, cold & I've put weight on too! I'm hoping that I might be able to lose some weight without them.

I have been caffeine free for years even though I'm not sure that that used to trigger it. I don't drink much alcohol but I do like a glass of wine or G & T - but obviously I haven't had any alcohol since the ablation. I avoid hills and stairs as they make be breathless and quite often after ascending them I could have an episode.

When I went for my pre-op checks I was told that I wouldn't remember anything about it - but I remember every tiny detail & in some ways I think it traumatised me as I was absolutely terrified - it was like an outer body experience. So at the moment I couldn't even consider a second ablation let alone a fifth! I think the only way I would consider a second is if my condition deteriorates in the future!

I wish you all the best and that your next ablation is successful for you.

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Hi DCCa. I have been through exactly the same experience for A/fibrillation. Was told “go for it. You can come of your tablets and anticoagulants “. So I agreed. Following the ablation was told that unfortunately they couldn’t stimulate the arrhythmia with drugs and it would only perform for 30 seconds at a time, so they couldn’t map it. Nevertheless he went ahead and did lots of ablating as he was sure he knew where it was coming from. I ended up being cardioverted Xmas eve and New Year’s Eve, very distressing as the arrythmias did get worse and I went from taking 80mgs sotalol daily to eventually 240mgs which still doesn’t control it. Life has become miserable. Annoy8ng th8ng is that I hadn’t had an episode for four months and was told I needed to come off all drugs for the ablation. I still think I would have been better carrying on with the sotalol and it could have taken quite a few years before I reached the stage of taking 240mgs. With hindsight it’s better to carry on with drugs for as long as life has good quality. Ablations, like pacemakers should be an absolute last option.

I do hope things settled ok and you are back on your tablets with a bit more confidence. Good luck and keep in touch.

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Hi there Lee I am back on my tablets and feel 'safer' on them but the downside is I can't really exercise much and I've put over a stone on in weight since being on them!

I've got to stop taking them this week so that I can have a monitor attached for a week to do some more tracking and then the cardiologist is going to discuss my next options. However, if they suggest another ablation there's no way I'm going to agree to that - so we'll just have to wait and see.

Take care

Debbie

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I absolutely agree. Wish I could go back four years and not have agreed to that ablation. It’s not too late for you though. It’s often a problem when you have to come off the medication, the ticker doesn’t like it and objects, then you go back on and it has to settle again. So don’t worry if it plays up for a week or so until it gets into your system again, it will go back to where you are now! What are you taking at the moment?

If you feel safe and can get on with your life, do so for as long as possible. The heart is capable of a lot more than we give it credit for, mine has been amazing. Despite the fact that it hardly ever gets sinus any longer, it has remained a normal sized compact heart, but still surprises me now and again by going into sinus and I wallow in the relief for as long as I can, knowing it’s having a bit of a rest at least. Sometimes I get sixteen days off, other times a week and then the odd day. Mainly my life revolves around 116-145 bpm thanks to the tablets. Not pleasant but better than a pacemaker, which again they make sound like that’s the end of your problems, but when you do the research they have plenty of complications! Never feel pressured into a decision. It’s your heart and, it will continue to serve you well, as long as you listen to it and follow your own instincts.

Keep well (and feeling safe)

Lee

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Hi Debbie

Forgot to say. I know what you mean about weight. I loved exercising and dancing etc., but all that stopped. What I did find helpful though was sticking to a low carb diet. For a start it cuts out loads of sugar, that most of time you don’t realise you are having, it lowers your cholesterol and gives you more energy AND you lose weight! It’s not a protein only diet so you still get carbs but much fewer. For instance, pure fruit juice, packed with sugar, I have a glass of mineral with a lime squeezed in, refreshing and sugar negligible and packed with Vit C. Look into it, even if you don’t stick to it rigidly, you can treat yourself now and again, it will start to get rid of those lbs!! There are small recipe books for low carb diets. You don’t have to follow them but they give you a good idea of the foods to eat, then you can use your own imagination with the foods you like.

Take care

Lee

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Hi Lee

Thanks for the advice. I am trying to cut down on carbs but it’s quite hard!

I had the monitor and whilst wearing it I had a couple of episodes but not too bad they only lasted minutes instead of hours but I had lots of what I call flutters and that pulse sensation in my neck/throat which is not pleasant. However, after I took the monitor back I was starting to feel so well & more my old self that I thought that it could only be the tablets that had made me feel so different so I’ve decided not to take them & I feel great - & the weight is coming down - I can’t believe how much they had changed my personality & ability to do things. I do still keep getting the odd flutter but nothing major. My heart rate can jump up to over 100bpm in a mili-second and then drop to 30! But overall I feel good, I’m sleeping better, I can concentrate, I’m less breathless & most importantly I’ve got my zest for life back!

I will wait & see what the doctors say but I’m going to try & manage without the tablets & just take one if I get a bad episode. I was on 5mg of Bisoprolol Fumerate & then went down to 2.5mg but even that was dulling all my senses and giving me physical symptoms that I hadn’t realised I was having until I stopped taking them.

Take care

Debbie

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Hi Debbie

So pleased things are better. I survived for many years with 40mg propanalol pill in the pocket. No side effects and only used them maybe four times on a year.

Good luck

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That sounds good - thank you & same to you 👍

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