So I am on flecainide and metoprolol and have been offered ablation following results of three day ECG. I've had two really bad episodes where couldn't breathe and almost passed out with several episodes of dizziness - these all happened before medication. Now I have tiredness, palpitations and Heart rate over 100 at least once a day - and I've been on medication for a week but had bisopropol as pip and had same. So has anyone regularly experienced AF on medication is my first question? Should I expect these symptoms to worsen meaning ablation is a no-brainer? What I don't want to be is scared of ablation meaning I end up in a worse state with symptoms. But I also realise this is step by step and my symptoms could ease - especially as flecainide been increased. Thanks everyone!
AF is almost always progressive in which case it will get worse over time. Any treatment is about improving quality of life so if drugs work then fine but if they do not then taking them in every increasing doses is a waste if time in my mind. They can harm you with side effects for no good reason if they don't work.
Yes ablation is scary unless you have had one and then wonder what all the fuss was about. Many EPs feel that early intervention by ablation before the AF gets too established has the best chance of a good outcome but contrary to popular belief EPs ( in UK at least) will not always suggest ablation as a solution. I know of many who will hold back if they think drugs are the best option. Be guided by your doctors in other words.
BobD hello I really appreciate your response. Thank you. So by progressive does that mean AF symptoms would be happening more often in a day? I've heard you can have persistent AF - is that like having symptoms all the time? I'd hate that!! So I suppose my decision is do I carry on as I am and risk getting worse or do I have procedure (with risk) and potentially have a success. It's more daunting facing it than leaving it behind I suppose. Thank you!
Some people are in AF all the time and strangely those people are often less worried by it as they are not constantly having to adjust. Typically a person may get one event and maybe a few months later another.then every week and then day etc.Events may lengthen and start to merge. The time frame is very individual and it could take years but the longer you have it the more you will have.
Further to BobD's comments you can be in persistent AF and also get a lot of symptomatic events when the heart is all over the place, is beating very fast or slowly. Sometimes I can be quite breathless, other times nowhere near as much so.
You're certainly getting more trouble than most and it's unusual to be on 2 different beta blockers.
There is a path from infrequent paroxysmal af to permanent and treatments from drugs to ablation to pacemakers in some. How far and how rapidly you travel this route will vary greatly as will your symptoms.
Many with af have no symptoms, but it sounds like ablation is becoming your route if things don't settle.
If an ablation is on offer then your EP must think that he has a fighting chance of improving your q.o.l.
Bob correctly says that root canal treatment is worse than an ablation. And it can't be that awful because people are willing to have more than one, if necessary.
Think very carefully about refusing an ablation. Don't risk living with regrets.
jennydog thanks Jennydog. When I had ECG I was extra sensitive to anything that moved - unsure I should have been - but I had almost 40 notes in my diary when I handed it in. Feel a bit silly but that's how it was!
Goldfish_ Thanks for reply. I'm actually no longer on bisopropol I had that as pip from A&E ahead of seeing the Consultant. I've been advised I may eventually need a pacemaker. I'm unsure what the path is
All about to be honest. I feel I don't know enough about this. I just know I'm sensitive to beta blockers as heart rate drops too low - I ended up on coronary care after being on bisopropol. So are symptoms usually not felt by people? I often feel tired with draggy heart etc. I've had a pretty boring three months off work waiting for hospital appointment as I didn't have correct treatment so my dr wanted me signed off. Feeling a bit fed up now.
A general comment is that af reduces athletic power by about 10%, so would rarely be a reason to stop work unless in a very physical job.
It seems like your heart electrics are more sensitive to things than most people.
Heart rate monitoring using the AliveCor would probably be useful for you to record what is happening bduring those "draggy times".
I wear a Garmin wrist monitor which records my heart rate continuously and although not 100% accurate does fairly clearly indicate to me when I'm back in af, which often seems to happen when I'm cycling on my bike and I can be fairly certain how much time I've spent in af.
I was asked to leave my job because of AF - I had a sedentary job. I couldn't even sit upright because of POTS with AF.
I had one episode of AF which prevented me from working. Unfortunately in today's workplace any chronic illness is not tolerated - this is especially applicable to the NHS. There have been several nurses blogging on this forum who reported problems with work because of AF and I had many clients - I worked as a psychotherapist - who reported similar experiences.
Every person who has AF will have a different experience.
CDreamer im unsure what POTS is? Sorry to hear you were asked to leave work - I'm unsure is that even legal? My employer has been supportive but I need to balance it all.
POTS is when there is an autonomic dysfunction which means your BP crashes when you stand up - Postural Orthostatic Tachycardia Syndrome. My BP would go so low that I often found it difficult to remain conscious when in AF.
My employer was a charity (not known for being that charitable toward their employees) it probably wasn't legal and I was advised that I could and should have taken it to tribunal - which probably would have been the end of the charity.
It was all very stressful and I decided that in the interest of my health, both physical and psychological, I resigned. I was extremely angry for about a year over the whole incident but life's not fair and I think I made the right decision. There are some battles you just can't win!
Goldfish_ i have a stressful job which can be physical at times and has big deadlines. My heart has been up to300bpm and down to 20 odd with pauses so it's not efficient really at that level! Thanks for the reply.
That was the sort of stressful environment that I worked in and absolutely no doubt in my mind that it was one of three or four main contributors to my AF or quite possibly the main reason.
At my last appointment with cardiology valve specialist registrar (not my EP) in response to one of my questions he said if in persistent AF you can loose 30% to50% of the hearts effective capability and I was in that category. I hadn't heard that before but then Ian (beancounter) the next week quoted the 30% loss in a post. Just shows you learn all the time!!!
I suspect from what you have said this applies to you.
PeterWh yiu said you wished you'd slowed down before AF hit hard. I was planning on getting myself spurred into doing all I could whilst I could do I'm intrigued why the regret to not have slowed down. Do you think you'd be fitter now?
Well there are two phases so to speak. I was / am in persistent AF.
PreAF diagnosis (but I know now that I was in persistent AF for some time before that) I was always rushing around, cramming things in, working long hours, always on the go, etc. When in my teens to early 30s it was the same (ie burning the candle at both ends) and played adrenaline fuelled sports (mainly squash and hockey - particularly indoors). In my mind adrenaline was one of the four key contributors. In my late 50s I was pretending to be in my 20s or 30s.
Post diagnosis I did change. Part enforced as I was made redundant but still did things which made me come out in heavy sweats and still "generated" the adrenaline (but to a lower level). Although in persistent AF adrenaline does make it more active and makes me feel worse.
A good analogy is the hare and the tortoise story!!!
Don't worry if the flecainide isn't doing anything for you. There are many of us (including me) who are in this boat. That's why my EP took me off it because in his words it's having little or no effect.
As you probably know flecainide is used for holding the heart in rhythm and ones like bisoprolol hold down the rate. However if someone with paroxysmal AF has an AF attack then they go into AF and if they take the flecainide as a pip then the flecainide helps to restore NSR which does reduce the HR.
When in persistent AF like me it has little or no affect. Then the bisoprolol may need to be increased or something else added
Julie, I am getting an ablation on October 19 and yes I'm ver nervous. I have had AFib for over ten years and have been on Flecanaide for that long. I suffer PAF with episodes that occur every few months and convert on my own between 12-24 hours. I started on a low dose of Fkecanaide plus a beta blocker. Within six months I was taken off beta blocker because HR was at 30. I am now on just Flecanaide 150x2 times daily. The addition of Pradaxa was made in May as I reached 66 years old. The medication leaves me very tired, ears are ringing and nerve pain in my lower extremities plus the medication hadn't kept me symptom free,
I have a very healthy lifestyle with no other health problems. The last few episodes affected me more than the ones I had in the past. When an episode starts I feel all the usual symptoms but am now feeling much more weak and much more nervous. As Bob says, AFib progresses and I know that my symptoms are affecting my QOL more than in the past. It is for these reasons I'm going with my EP 'S suggestion of a Cryoablation. I hope my story helps you to understand that the decision of ablation vs medication is very individual and can take time to decide your own path. Take your time and mostly stay on this forum because these lovely courageous people have helped me to make my decision. We are in this together, Gracey
Gracey23 good luck with your ablation. Sorry to hear medication hasn't worked. You sound like you've got to a decision. Are your episodes symptomatic with other quieter no symptomatic episodes in between?
My first year on 100mgs x 2 of flecainide was AF free. I had a few episodes in the second year, say once in six weeks, but in the third year they were getting more frequent and lasting longer and I moved up to 150mgs x 2 per day in July 2013. I noticed no real improvement on the higher dose but numbness in my toes, which is probably a side effect, certainly spread to heels and ankles. I know when I am in AF because my heart is going wild but I'm not much affected - neither breathless nor tired. It doesn't seem to bother me physically too much at all but the first echocardiogram showed a slightly enlarged left atrium and by the second it was moderately enlarged. Ablation has enabled me to give up flecainide on a daily basis, but I still get AF occasionally. I haven't been offered a third echocardiogram and have no idea of the current situation. Without the ablations I had in March 2014 and December 2015 I think my situation would be very much worse than it is. I regret relying on daily flecainide for so long.
Rellim, my EP said that after the ablation I need to stay on Flecanaide for three months. I am so looking forward to being off this toxic drug. I also have numbness and sensations in my feet and even in my legs. I'm very happy for you that things are going so well. Can I ask, how long did it take for the side effects of Flecanaide to go away? Gracey
Yes, I stayed on flecainide for 3 months. I gave up 100mgs at once, reducing to 100mgs x 2 per day. After 6 weeks I dropped another hundred and was on 50 x 2 and then stopped altogether after another 6 weeks.
I still have the numb feet. I think the shins got back a bit of feeling though. For some people the sensation returns. I think it's better to have funny feet than a distorted chamber of the heart from too much AF so I'm not sorry I took flecainide. It worked well. I just stayed on it for too long. I still rely on it as a pill in the pocket.
Rellim296 it sounds like you have had a tough journey. I am so naive and I haven't really a clue what these medicines are supposed to do or for how long etc. It sounds like long term the AF breaks thru the medication and your hindsight is valuable to people like me. Thank you! Hope you stay well as possible.
I hit a low patch for a few months three years ago, very unhappy with some of my medication, and bothered by the risk of stroke which loomed very ominously as did the threat of haemorrhage. I felt fettered and much older than I was. I found this Forum and have become more blasé, bolder and far more at ease with the way things are. I still have the odd bit of AF, but feel very lucky to be as I now am. I'm very grateful to my EP who has done wonders and to my GP.
Rellim296 its awful to feel alone with a condition. I think the support on here is exactly what we all need! Good job you have a great support team too.
Thanks. The forum is a great source of encouragement. My husband has always been very supportive so I haven't felt on my own, nor indeed do I feel I have had a particularly tough time. I've had a dodgy heart for about 25 years and AF, diagnosed about 6 years ago, has never been particularly intrusive. My difficulties were more the impact of medication I very reluctantly took and a feeling of being vulnerable and very much at risk. I felt very out of step.
Flecainide eventually failed to keep me in NSR and I went into persistent AF and was put on beta blockers which slowed me right down. So in my experience it is progressive as originally I was having just 1-3 episode a year. I opted for alblation once in persistent AF but was told by the EP that I should have had it done much earlier as the AF had really got a hold. So I am now a difficult case with 2 ablations under the belt and still not really sorted as have been put on Amioderone until my next 3 month appointment. We must all make decisions based on our own experiences so I would have a good chat with an electro physiolologist and see what he/she recomends. Good luck with your decision.
cbsrbpm thank you that's good advice. When you say episodes do you mean AF with bad symptoms? I hve been in and out of AF without knowing and I'd call an episode where I was dizzy or cldnt breathe I just wonder if others have lots of AF where they feel just palipitatikns or nothing so it doesn't bother them....but that the episodes do. I hope you get things sorted too! Thank you for replying.
I would be in normal rhythm mostly but an episode would be when my heart went into fast AF and be all over the place for anything between 1-7 hours. When in persistent I was in AF all the time but beta blockers kept the rate low.
Hidden thanks the flecainide is ok but my heart still fast. Getting cold feet at night time. It's good to hear you benefited though. Thanks.
I'm currently weighing up an ablation, my situation is I have paroxysmal AF for last 18 months, 3 relatively short episodes which have reverted to nsr on they're own without my pip which is bisoprolol
I don't want to be wishing in years to come that I'd gone for it and didn't wait until I was in persistent..... it's a really tough choice to mske
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stopping Flecainide
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Amiodarone?
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