is as follows. I am persistent/ lone AF with a background in extreme and endurance sports.
November 2012
AF diagnosed after ECG
18 April 2013
Successful Cardioverted
8 Sept 2013
Slipped back into AF after 5 months in sinus rhythm
9 January 2014
Successfully Cardioverted again but decided against cardiologist recommendation to take Flecanide after cardioversion.
16 January 2014
Reverted back into AF after one week
20 January 2014
Went into Hospital on GP recommendation to see if I could be medically (Flecanide) cardioverted and be given a pill in the pocket if I reverted back again. Kept in overnight as my blood count was high.
21 January 2014
Saw consultant/cardiologist who said I had not had a heart attack (high enzyme blood count) much to my relief. Discussed my AF and he said he did not think Flecanide cardioversion would work and was not recommending it. He advised I could live with the AF untreated until I get my ablation, or go for another electro cardio version but recommended that I take the anti arrhythmic Amiodarone before cardio version and after. I agreed for cardio version but wanted to consider whether I wanted to take Amiodarone and need to decide soon and start taking the drug?
Interesting that my Cardiologist had recommended cardioversion with Flecanide and this cardiologist at the same hospital recommended a different drug in Amiodarone with a cardioversion!
So to my question and decision, do I take Amiodarone to help me stay in sinus rhythm longer with my next planned cardio version; or do I steer clear of the risks associated with the drug and carry on as now knowing that if I go back into AF after the cardio version as inevitably I will at some point I'm not overly symptomatic and have a resting heart rate below 80. In AF I go out running or cycling good distances every second day and don't want to jeopardise that well being by taking such a powerful drug?
I suppose what would swing it for me to take Amiodarone is knowing that it would be safer then staying or going into AF again.
Does staying in AF do damage to the heart and is my heart at less risk of damage if I take Amiodarone.
Your experience and knowledge in making this decision will be much appreciated.
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Elbows
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Isn't this something only you can judge Elbows? I asked a similar question a few months back and replies came back that it was up to me because only I could feel how I was getting on. I had the situation of constant arrhythmia which I could live with but worried me about what it was doing to my ticker and surrounding gear. I had the choice of taking no drugs, or different levels of the same drug.
I tried with none, then tried a small dose of Flecainide as it happens, gave me palpitations so that went out the window! Then tried another drug, Propafenone, worked a bit but made me depressed. Eventually been put on Disopyramide which has worked for me and I now have a normal pulse which I can feel with my fingers for the first time in probably a year, and I feel stronger and alive (going to get my bike out soon, round the lanes though ).
So if you asked me would I prefer to take one of the first two drugs or go without, I'd go without, but now I've found the last one, I'd much prefer to be taking the drug. At least till I can get an op/ablation hopefully. Wouldn't want to take them long-term though if I can help it.
Could you try the drugs, see how you get on. If no good, try another till you get one where you feel the benefits outweigh the downside?
I didn't realise how much the A.F. was affecting my life until I took flecanide which has worked for me. I now feel like I'm switched on again and am enjoying all I do as much as I used to. Before taking it I was just battling on regardless with my exercise routines but was finding it all hard work. If the meds stop working I will definitely have an ablation to get some more A.F. free time. Very personal decision though.
Hi Elbows, well I guess you know that it is most likely your endurance sport which has started the AF in the first place unless you fly fighter jets for a living. as those two activities are prime causes of AF in younger people.
My feeling is to get an ablation done as soon as possible and not worry about cardioversions as you seem to have had ;less and less success with those pointing to a need for more drastic solutions.. If you need to take amiodarone for a short time I doubt it will cause any lasting problems and in any case you should be monitored whilst on it. I hope that you are under an electrophysiologist rather than a plumber type cardiologist by the way. as these are the people who actually understand AF and what it entails.There is a list by area on the main website so if not then demand to see one. I doubt that you qualify as at risk of stroke but just in case do a CHADS2 check again look on the main website. AF increases stroke risk by a factor of five and most of us need anticoagulants.but then we are probably a lot older than you are. Still worth checking.
Was on Amiodarone for 2 years and it stopped the AF in its tracks during that time. (albeit 10 years ago)
In the time I was on it, I had no side effects at all. When I came off it however, the hospital that stopped it and put me onto a beta blocker did not check my thyroid and a month later I went hyperthyroid in a very big way (went undiagnosed for 2 months until I had lost 15kgs !!)
I was also given Amiodarone again prior to my last cardioversion in an attempt to assist in the event that I converted, which I did for 2 days.
My understanding is that the worse issue with Amiodarone is a lung problem, but that is usually only when taking more than normal dose (200mg/day) and over a longer period of years.
I was diagnosed with AF ... (170bpm) Stayed in hospital while they tried to medically convert, which didn't work, tried electro but found a blood clot, after three weeks of blood thinners Xarelto the did the electrocoversion normal sinus Rhythm only lasted 18 hours. Dr, put me on Amiodorone to strength heart for another try, loaded my body with 800mg a day for two weeks, day before I was scheduled I went back into normal rhythm by itself. He has left me on 200 mg a day until March to strengthen heart, being in AF for as long as I had been had caused the lower chamber to stretch and only working at 30%. Plans are to stop it in a March, he assures me that he can switch me to something else that doesn't not have long term side effects . Friends have told me not to stay on Amiodorone for more than a year due to thyroid problems, hair loss, and more
I have persistent AF and after 2 cardioversions which worked initially but left me with AF after several months. I went on Amiodarone and had another successful cardioversion. I then had a period of around 6 years on Amiodarone AF free except for one instance when I had a very stressful day and went back into AF until cardioverted again. But after 6 years on Amiodarone it started to cause deposits in my eyes so I was switched to Dronedarone. Within a few months I was back in AF, and I've now stopped taking either and elected to stay in permanent AF as I've been advised against trying ablation.
So Amiodarone worked for me for 6 years, but it was not a long term solution due to it's side effects. Dronedarone doesn't have the same side effects but seems to be less effective.
I've been told that life expectancy if you elect to stay in AF is no worse than if you manage through ablation or drugs to stay in sinus rhthym so it comes down to quality of life and only you can say if the AF affects that
Thanks Koll, Dedeottie, Jennydog, BobD, TerriN, Excalibur and gerriatriq for your responses. This forum is such a good and supportive community for AF.
Gerry, I'm not on any meds at the moment other then warfarin for cardioversion. I have lone and persistent AF. I'm relatively unsymtonmatic and am able to go out on my bike and do 30 miles and 5 mile runs albeit at a slow pace.
Previously to my last cardioversion when I was in AF I felt quite good considering. If anything the second reversion as set me back again just as it did after the first one failed after 5 months of sinus rhythm.
My dilemma is do I swap the relative stability and low resting heart rate of 80ish ( 40 when not in AF) for medication and sinus rhythm. My view having read up on Amiodarone and looking at people's experience of the drug is that I would prefer to stay in AF as it is not really effecting me too much as long as I remain stress free. Amiodarone can have serious side effects and why do I want to risk them when I'm relatively ok in AF!
My concern and question is that if I stay in AF will it damage my heart and does exercise make things worse?
I have been referred to Professor Schilling at Bart's but it could be some weeks/months before I get to see him to get expert EP advice and direction I can have confidence in and hopefully get an ablation.
I don't think the cardiologists I have seen at my local hospital have a very good understanding of AF. I am concerned that my cardiologist recommended Flecanide with my last cardioversion but that when I went into medical assessment when I went back into AF the cardiologist there recommended Amiodarone with a cardioversion.
In short given I'm unsymtonmatic in AF do I need medication other then warfarin?
Hi Elbows, you don't say what strength Amiodarone you are on, I have been on Metropolol (Minimal Side effects), Sotolol (very bad side effects), and now Amiodarone 100mgs per day (no physically apparent side effects). You should be monitored whilst taking Amiodarone, and from my own research of this drug, it could effect all parts of your body the main one seems to be the Thyroid, but there could be others. My latest blood tests ect., are OK. My condition is AF/SVT the SVT is the one that they seem to be most concerned about for me, as it can go over 200. It seems to be a bit drastic for AF which you can manage by other means, I am not sure about cardioversion. I have read somewhere that you could be given this drug before you get an ablation, maybe that's the reason!. You don't say how long before you get to see your professor?
and you don't mention the level of this medication, Its a dilemma to be sure, you need to keep fairly fit, and you might love doing it. Maybe your GP could give you some answers in the meantime, and then you could weigh up the pros and cons and decide during your visit.
Hi Ultramarine and thanks for your contribution. I'm not on any medication at the moment other then Walfverin and I have only just been referred to a Electro Physiologist (EP). My resting heart rate is around 80 bpm and and I'm relatively unsymtonmatic. I have been advised by a hospital cardiologist to take Amiodarone with another cardioversion to help me stay in sinus rhythm. I need to decide is it worth the possible side effects of this powerful and potentially dangerous drug as on balance I'm coping well in AF. But I need to know (as I'm finding it difficult to get a clear answer) whether I am doing harm to my heart and jeopardising a possible future ablation by staying in AF until I get expert help from an EP?
I originally had a dilated cardiomyopathy which may have caused the AF or vice versa. I am now on a beta blocker (nebivolol - was on atenolol but it had side effects), an ACE inhibitor (ramipril) and a statin (simvastatin). I am also on an anticoagulant (warfarin). If you are likely to have an ablation in the future, amiodarone could be a good temporary solution. You could also ask about Dronedarone but as it's more expensive there are some rules about when it can be prescribed. In my case it was less effective.
Thanks Excalibur, just spoke to EP secretary I have asked to be referred too and I will have my first consultation in the next 3 to 4 weeks so I'm going to leave my decisions until I see him as I will have more confidence in his advice then a cardiologist.
Elbows, At the Patients Day in Birmingham we had a number of what I believe are leading EP's. They told us that ablations are way ahead of drugs by a country mile and they were recommending ablations as a possible first treatment. I can't remember exact details but I recall ablations being 4 or 5 times as "good". Someone else may remember the exact figure and I've no doubt got it wrong, but definitely ablations come out tops (usually, not always of course, as it's individual).
Also, what was said quite clearly was the earlier you dealt with your AF the better, and that the longer you stay in AF, the harder it becomes to treat. I think they were referring to ablations but I just heard to overall message.
Personally, sounds like not a lot is going to change in the next few weeks, so I'd wait till you see your EP, because they're the ones who know what they are doing, then decide what to do.
If you can make one of these days, they are really, really worth it.
Hi Koll, I was at the patients day in London and Professor Schilling was one of the speakers who talked about ablations. I managed to speak to him and he's is the EP I am going to see. I was so impressed with him and his expertise in AF. He gave me new hope that I might be able to compete again as a keen racing cyclist.
I have or hopefully had paroxysmal lone AF, which only started last March / April 2013, I think it had been brewing longer, but showed itself with a vengeance at this time. I too, liked my exercise, running a mile to the gym, three cardio classes on the trot and then a mile run home, however I also had a stressful job.
I tried many drugs unsuccessfully, had an emergency cardio version and resisted Amioderone for as long as possible, unfortunately when this condition hit it came like an avalanche and I was very affected.
I was put on Amioderone after the cardio version, approx five weeks prior to a pre arranged ablation. I was advised that the treatment should not cause irreversible side effects when used short term and I would be on it for the minimum time possible.
My EP, initially discontinued the Amiodarone pre-op, however post-op after informing me that he had done a lot of burning, he decided to keep me on it for a further two weeks, to let my heart rest and heal.
I have to admit, although I really did not want to be on this drug, because it was so effective, it became a comfort blanket and I was a bit scared that without it all the symptoms would return and the op would have failed. Fortunately although I still have little runs of AF and ectopics, on the whole I feel so much better and almost normal, at 6 weeks post-op, I'm keeping every finger and toe crossed that as I get nearer to the magic three month mark things will continue to improve.
I have n't returned to the gym yet, although I was dragged to line dancing last week, which is harder than it looks and I got through it without a palpitation, yeah !
I know, I' m lucky to have had so much excellent treatment so quickly, it really does seem to be a post code lottery.
The sooner you get this sorted the better as prolonged AF can cause cardiac remodelling, which can cause permanent changes to your heart, apparently AF begets AF.
As long as your monitored whilst on Amioderone and it's for short length of time, it can be helpful, at least it seems to have been for me.
Hope you see a good EP soon and get some direction and appropriate treatment. Good luck.
Like you Elbows I was diagnosed with persistent AF in Nov 12, like you I was and still am very active. I was placed on Amiodarone straight away which was and still is a concern which I will be addressing with my Cardio next week. Being on Amiodarone hasn't stopped me doing anything. I still play sport, I compete in half marathons, tough mudder etc. I have regular thyroid checks and thus far no complications. I notice you have had a lot of responses about being on the drug, all of which valid, but to answer you question about carrying on with your endurance sports all I can say is it hasn't harmed me.
Hi Fussyface and Jason and thanks for your contributions. I'm looking forward to seeing Professor Schilling at Bart's in the next 2/3 weeks and I'm gong to take direction from his advice in the confidence that as a Electro Physiologist and as a leading and eminent expert in AF I will be in
I was on it for 6 years then started with a cough after they had increased my dose to 2 x 200mg a day, over 9 months I went thro being told I had a shadow on my lung from an X-ray, CT scan and they told me it was a tumour, PET scan then said not cancer, then had a CT guided biopsy cos it was at an awkward bit to get at, and all inconclusive. Then had a thoracotamy and removed a section of my lung and told it was not cancer it was a brown sticky stuff. A week after I was released from Clydebank Jubilee Hospital, my local hospital did another chest X-ray and it was a lot worse and spread to both lungs. After a few weeks in hospital and daily getting worse they were trying to identify what the 'infection' was, but no joy. Then after a lengthy chat with a doctor from infectious diseases asking about travel, she then looked at my medication and she thought on lung toxicity and suggested stopping amiodarone. When I read the patient information sheet provided with the tablets, all the symptoms I was suffering were listed. You don't think to read these after you've been taking something for 6 years. After a week the cough stopped, and it took a long road to recovery and get the poison out my system as it takes over a year to get totally rid of the stuff.
Now I have persistent AF 100% of the time, had an ablation last August, I was free of AF for 6 days then back into it full time. Got another ablation 3rd Feb, finger crossed this time.
Hi Costa, thanks for your contribution. Your experience of this drug is very sobering and hopefully helps to inform others when making a decision to take it or not take it. It certainly as helped me and I will only ever want to take this drug as a last resort and when on balance it's benefits will outweigh the damage it can possibly inflict on the body. I was prescribed this drug by a cardiologist who had little time to talk to me as he was on his rounds. He knew nothing about me and how I was managing my AF and how symptomatic I am in AF. To be honest I would prefer to stay in AF then use this drug and would only want to use it to help with an ablation. Your link was also very useful too as it gives testimony to others experience of the drug and it's toxicity. I wish you well with your recovery and ablation and thanks again for your contribution to this really important forum.
Hi Elbows. what fun we have NOT! diagnosed persistant AF dec12, had cardioversion and put on 1200mg of Amiodarone being reduced weekly to 200mg. had mitral valve repair and maze ablation feb 13; cardioverted day after. kept sinus for 6 weeks. then back for cardioversion in june - fine- then back in AF in oct 13 sane routine ablation and cardioverted 3 times during surgery. back in AF before i left the hospital. then another ablation 3 weeks ago and I a new woman - Amiodarone isnt a very nice drug at all! was so ill when i started on it, vomiting etc. was also very intolerant to the cold and am hypo thyroid so that doesnt help either. this drug isnt intended for long term use. i can taste it coming out through my gums sometimes (my hubby thinks Im nuts). if you decide to take it the benefits will win through - im on it 14 mths and hoping to get off soon. small bit of advice for you - get anti nausea tabs ie maxalon from your GP if you are sick -not motillium as it is contraindicated, wear uva and uvb factor 50 sunblock especially as you are an outdoor person, get uv protected sunglasses as your eyes can become sensitive to light. also Amiodarone lays down a distinctive pattern on you corneas/retinas so if you are on longer than 6 mths get your eyes checked. it does reverse as far as I know! keep the head down, tuck in those elbows and go for glory!!
Hi Keeponticking, thanks for your response. I'm off to see an EP next week so I should be some wiser on treatment and more confident in care, procedures and drugs he recommends.
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Amiodarone
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