Feeling a little lost 💔

Hi so I'm new to all this and feeling pretty beaten down and overwhelmed.

29 year old started with palpitations, dizziness, vertigo , shortness of breath before Christmas very intermittent/rare so didn't go for investigations until may. Results showed nothing abnormal but ectopic beats for which a cardiologist in hospital was extremely rude about and told me he deals with them every day and to basically get over it?! Anyway ..

Bought a kardia as advised by my cardiologist and managed to capture 160bpm "possible AF" episode for which I was diagnose straight away with SVT and put on verapamil 240mg SR daily. Ablation was mentioned.

A week later following a night shift and I'm in A&E with AF :( They discussed cardioverting with me but luckily called my cardiologist first who advised 100mg flecainide stat which reverted me in an hour to two.

So I was sent home with

50MG flecainide BD

Verapamil 240mg SR daily

And xarelto 20mg daily.

Now I'm awaiting an ablation but the side effects of the meds are pretty much wiping me out, insomnia, nausea, tight chest. I've asked to reside the flecainide and I'm awaiting a call from my EP.

I suppose I'm just looking for some positive reassurance that ablations can work?. My EP seems to be pretty certain that this will all be over in a few weeks/couple months but there seems to be few stories of ablations actually working 100%?

10 Replies

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  • The trouble with the internet is people are more motivated to write when there is something to moan about! So you don't hear about all the success stories.

    I think it's right to be a bit sceptical, to be a bit cautious. But really, if arrhythmia is causing you so many problems, and the medication is almost as bad, you haven't got much to lose. I think ablations are relatively safe procedures and look at it this way, they must be working for some people, otherwise why would the NHS keep doing them?

    There are a few success stories on these boards, if you do a search.

    Sorry to hear the cardiologist was rude or dismissive to you. When I went in with ectopics they were quite nice and reassuring about it. Luck of the draw I guess.

  • Ablation stands the best chance of improving your quality of life BUT you must understand that it may need more than one procedure. I had three over a period of years before my AF was kicked into touch about nine years ago and I confess to being a fan. There are quite a few people who have first time success but forewarned is forearmed .

    As UScore mentions few sucess stories hang about here as they don't need us any more. Only a few of us who remember just how s--- scared we were back then remain to try and encourage others. .

  • Hi Reebe

    Well none of us are medically qualified, and of course your EP is the most important advice here, but from my limited experience, and from posting on the forum I would say

    1) You are young, and therefore much more likely to heal quickly, and easier to work with.

    2) You did not mention any underlying challenges with the heart very positive

    3) You mention SVT first, SVT ablations have a much higher success rate

    I suppose the only potential fly in the ointment is what is causing the AF in one so young, but most posts and indications would indicate you have a much higher than average chance of success.

    It's probably the Verapamil which is "wiping you out" it gets better, plus a little surprised with the anti-coagulant Xarelto (Rivaroxaban) in one so young, do you know if your EP did a Chads2Vasc score on you?

    I think actually most things are very positive for you, and good luck

    Be well

    Ian

  • I believe that regardless of chads2vasc score you would need to be on anti coagulation for an ablation and I was told for a NOAC for 4 weeks before so maybe in readiness for ablation? Just a thought.

  • Yes of course entirely correct apologies silly me

  • Thank you for your replies, I almost feel better already putting it down in writing.

    I'm glad to be having the ablation as any improvement would definitely be welcomed at this stage. I just worry I'm pinning too much hope on it.

    I have a CT scan tomorrow in prep for the ablation so I suppose that will be the final puzzle piece to see if there are any other underlining issues. I'm not sure if they did a Chads2Vasc score to be honest?. It was all done in ED.

    When I had a follow up with the EP he said best to stay on the rivoroxaban before the procedure as they would need me to be on anticoagulants for a month before anyway?. So almost sounded as they were not 100% necessary to my condition possibly just pre procedure?.

  • Since my ablation in December 2015 I have only had one noticeable episodes of AF (I say that to be accurate because it is possible to have them unnoticed). I was warned I might need a touch up but so far so good and no medication either. Our experience seems to be that ectopics are pretty hard to 'get over' but an ablation does nothing for them. Best wishes!

  • Is think that we are all different and so the results of our treatment will be different. My EP explained that because of the nature of AF they don't always manage to get all the rogue pathways on the first ablation, but sometimes have to do a second ablation just to complete the procedure. I think it has to be worth a shot and the good chance is it will improve your quality of life so you may as well go for it x

  • Hi Reebe

    I consider myself very lucky and pleased i had an Ablation - i had been in and out of hospital trying to get my heart rate to settle for months - in fact i have got to know the drs and nurses quite well during this time - i ended up speaking with my electocardiologist bursting into tears and said is this what my life has become - going from picking up a virus on my lungs ending up with heart failure and respiratory failure was so scary - once recovered from this the dr found my heart was doing silly things - sent me to hospital - AF with Flutters. - and as i say many visits to hospital they tried Cardio version which lasted 12 hrs - But to have NSR for 12 hours was wonderful and made me realise how bad i had become - Back in hospital and next thing booked for Ablation - straight afterwards i felt wonderful to have my chest nice and calm and to stay like that - they were very pleased and said the Ablation had gone really well - i was told that i may have the odd bout of Palpitations and now that the Flutters have been removed i will not have many AF episodes as they thought the Flutters bought on the AF - I had about one AF episode every couple of months that last about 1hr - all drugs have been removed just on Dabigatron ( Pradaxa) Bloodthinner - that was 15 months ago... i just love being off the meds...

  • Hi reebe , only just seen your post , I had 1 known run of AFib last November for the first time , it was a seven hour run of PAF that was a fast one , I felt it come on after a run of ectopic beats. I had my first ablation nearly 2 weeks ago and they found SVT as well . I think I have SVT for years as the symptoms were skipped beats then a bang in my chest then a fast regular pulse . So on the day my AFib wasn't coming out 🙄 they then took a look in my right atrium and the SVT came out as my understanding. However I think they then after a while managed to start the AFib off . So I ended up having a cryoablation and RF ablation at the same time . It's very early days but apparently the SVT has a really higher success rate 👍🏼so that's pretty good news . I no it's worrying as I am one of the most anxious people going . If I can help in any way with any questions feel free to ask me 😊❤️

    Best wishes

    Sam x

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