25 years of Paroxysmal Atrial Fibrillation (PAF)

Hello all

Firstly I think I may have posted this twice as I lost it once and could not find what I had done with it. If so I must apologise.

I am new to this forum but decided to join after first finding it only last week and then reading many posts that encompass so many things that I am so familiar with. I have suffered from Paroxysmal Atrial Fibrillation for 25 years now and I am 69 years of age.

When I was first diagnosed I staying in AF for 5 weeks with all the initial worry and was ultimately Cardioverted. I was then prescribed Sotalol (a betablocker) but I found the side effects like a chemical cosh and difficult to accept and was taken off the drug after about a year.

For the past 20 years so have been on a combination of 100Mg Flecainide twice a day and 1.25Mg Bisoprolol once a day together with Warfarin. I regularly go into PAF at intervals of between 1 week and 2 months lasting from 5 hours or sometimes up to 2 days. As you will all no doubt be aware there is no way of predicting the frequency.

The consequence of taking the Flecainide and Bisropolol is that my resting sinus rhythm is normally between 40 and 55 and therefore when I slip into PAF whilst it is rare (but not uncommon) for my heart rate to be over 100bpm and up to 150bpm normally in AF it fluctuates between 70 and 95bpm. This is still almost till twice my normal resting heart rate.

Throughout the years I have always been very symptomatic when in AF with palpations, nausea, breathlessness, lethargy and depression. During these times I have all the fears, depression and worry that I have read from others contributing to this forum. I know that some are able to look at their condition as a glass half full but unfortunately when I am in AF I can only see it the glass half empty despite my best efforts at positive thinking.

On the contrary, when I am in normal sinus rhythm and feeling ‘normal’ I am far more positive and always try to look on the bright side. I remind myself that in all the years I have gone in and out of AF my heart has always reverted to NSR at the end of each occasion. I always live in hope that each time this was last episode and that all will be OK in the future. Sadly for me, so far, this hope has never been fulfilled.

When I go into AF I normally am able to cardiovert myself, as advised by my EP, by taking extra Flecainide but on about a dozen occasions in the 25 years this has not been successful and therefore I think I have now had about 12 cardioversions that were in themselves successful in returning me to sinus rhythm. What a lovely feeling it is when you come to from the anaesthetic and your heart is beating normally!

When using the Flecainide option I find that total relaxation and isolation can assist in the process of returning to NSR.

Ablation was first offered to me in 2009 having spent 16 years or so with just the drug therapy keeping the problem under a degree of control. For those asking "how many ablations can I have": I can tell them that I have had 1 flutter ablation (Right Atrium) 2009 and 3 AF ablations (Left Atrium) in 2011, 2013, 2015 a total of 4 so far. I am now on my third cardiologist in 7 years and the new man is now planning my 5th ablation in August 2016. The first EP being an eminent Professor with many years of experience, he retired two years ago. I would hasten to add that the hospital is one of the leading UK centres for heart rhythm management and I still have great respect and trust in those I am dealing with.

For the first three ablations the procedure was carried out under sedation. The first two were fine and I remembered little but sadly the sedation given during the third ablation in 2013 was virtually ineffective. The procedure took 5 hours so it was for me a real ordeal. I have seen the videos of patients chatting to their surgeons or EPs during operations and procedures but sadly I am not made of this stern stuff some might call me a wimp but that is the way it was for me. What is more the ablation once again did not resolve my PAF and I had to go into hospital a few months later for a Cardioversion. Ah yes worth mentioning here that all cardiversions have been successful in returning me to NSR.

On this occasion and whilst in hospital to be ‘rebooted’ the new consultant decided that the best course for me was to have yet another ablation but this time under a general anaesthetic . This took place last November 2015 and for me this was much more tolerable. But again my PAF has prevailed and I am no still suffering on a regular basis.

6 months after this fourth ablation I had a follow up outpatients appointment and met my second new EP Cardiologist. Taking a fresh look at all the data he took the view that because there were "multiple areas of venous reconnection” following the last procedure, a 5th ablation would still have a reasonable chance of success, with the caveat that there was obviously no guarantee.

I must admit it was a big decision for me to accept this advice but because I suffer so when in AF coupled with the positive vibes I got from the Consultant I have decided to let him try his best to help me. This did not go down too well with my adult children but they do not have to live with it. My wife is fully supportive as is my dentist interestingly.

As for those of you who are concerned about having an ablation I hope I haven’t worried any of you. I would encourage you to go ahead and be positive, my understanding is that for a very high percentage of patients the procedure is successful at the first attempt and that I am the exception rather than the rule. I think this is also supported by the fact that there are a growing number of cardiac centres around the UK and the world with dedicated Cath labs carrying out ablation procedures on a weekly basis.

On a further personal note, sadly for me I developed an acute skin reaction to the sticky pads that were attached to me during the procedure 2013, the Urticaria lasted about 5 months. I was very itchy and it was very hard to cope with causing severe lack of sleep.

Since then my skin has reacted every time I have sticky pads for heart monitoring or cardiversion and the same thing happened again last November this time lasting approximately 2 weeks.

In January I had an unrelated 3 hour operation on my hand following a very bad accident and again I had an acute skin reaction to heart monitors which lasted 2 weeks.

My next ablation is planned for August and the doctors have now got the message regarding my allergy. It is planned to keep the stickers on me for the minimum amount of time and to wash the sites where they were adhered very quickly after removal even before I wake up so wish me luck.

Moving onto Ectopic heartbeats I was fascinated to watch Dr Gupta’s video a couple of days ago. (Thank you so much Dr Gupta for all your contributions) I have Ectopics regularly. Dr Gupta discussed my symptoms exactly; I experience the nausea in my throat an also am very aware that I have extra beats when I lean forward coupled with nausea.

I would finally apologise to anyone who found my account long, rambling and complex but I hope you understand that whilst for years I have regularly visited the Internet to research my long standing problem I only found this forum last week. Whilst my wife has been extremely supportive throughout the years I have felt very alone with little opportunity to discuss my problems with anyone who really understands how distressing AF can be for some people.

I am now praying that this next ablation will be a success and that at last I will be cured, I will try and post my progress.

Thank you

21 Replies

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  • Hello Pete and welcome to the forum. My journey has probably been as long as yours although it was 2004 before a change of house and doctor actually gave me a diagnosis. Since then I have had three ablations and four cardioversions (five if you include a faked one for a film about AF) and for the last seven years have been AF free although I do still get plenty of ectopics. My treatment was all done at Royal Brompton Hospital even though I live in Devon.

    Yes it is a journey but I have been on this forum and prior to that on the old Yahoo AF Association forum since we started in 2007. I commend to you the literature available for download from AF Association website and also our patients day at Heart Rhythm Congress each October. (details on AF A website.) Being able to share experiences and meet fellow sufferers is an important part of dealing with this mongrel condition and I applaud you for having survived so long in the wilderness. You will find a very supportive group of people here with regular social meetings and even one or two patient support groups about the country (UK) as well as a fairly world wide audience.

    Enjoy

    Bob

  • Bob

    I thought I had replied earlier but it is not showing

    Thank you for your reply.

    This forum clearly is very valuable to many sufferers, I will try and contribute whenever time allows.

    Best wishes

    Pete

  • Welcome to you, Pete. I think it is great that you found this forum and that you have a story to share that will be helpful to many. Learning to live well around AF is surely a journey best taken if one keeps a flexible approach, a positive attitude, a healthy lifestyle, and a good support system. Wishing you great success with this next ablation. Keep us posted and be well!

  • Hello Grandma

    Thank you for the welcome post.

    Bit confusing for me as my wife is Grandma to all our 7 grandchildren.

    I thought I replied earlier but it is not showing here.

    I agree with all the sentiments you have expressed I hope that sharing my experiences will prove useful to some.

    I do try to be positive, I regularly walk (when not in AF) and go to the gym (not too strenuous) but again for a long measured walk.

    I already appreciate the benefit of the forum.

    Best wishes

    Pete

  • Hello Pete and welcome to the forum. This is a superb place to share ideas and get advice and support from fellow sufferers, so it is good that you have finally found us. You've had a very long AF journey and thank you for your story which I found interesting and to which I can relate as I dread the return of AF too - mine is controlled by Flecainide at the moment.

    Dr Gupta has recorded a very good video on breathing and ectopics - there is a link to it on this forum if you search in the top right box. His breathing technique (only 6 breaths per minute for at least 5 minutes) stops my ectopics - even PVC's - each time. Such relief.

    I hope your ablation is successful and would be interested to hear how you are.

    Best wishes

  • Thanks for your advice on breathing, relaxation has many positive benefits. I will take a look at the other videos by Dr Gupta.

  • Hi Pete and welcome, I am sure you will have a lot to contribute and hope that you will find the support and comradeship that we all have. So glad you eventually found us!

    I, like Bob, have no AF following 2 ablations - 2013 & 2014. Following 2nd I developed a neurological condition and unfortunately the meds I now take also are giving me ectopics and tachycardia - for which I cannot take any cardiac drugs as they exacerbate Mg - and so becomes a viscous circle. I am crossing my fingers that AF does not return because my treatment options will now be more complicated. But so far so good!

    Good luck with your ablation 5th time lucky, we will be rooting for you so that will make all the difference - LOL.

    Best wishes CD

  • Hello CD

    Thanks for the reply.

    Was the neurological condition related to AF or the ablation or was it a separate issue.

    We do have to be careful about interaction of meds. I have an ongoing back problem with my sacroiliac and lower back discs but cannot take anti inflammatory drugs as they interfere with Warfarin. Likewise I rarely drink alcohol these days for the same reasons.

    I hope things improve for you

    Pete

  • I think it was a completely separate issue but exacerbated when I took Flecainide. I am afraid it is a chronic condition and the future is uncertain, I could go into remission or it could deteriate.

    I agree re interactions and I rarely drink although it doesn't make Mg worse but can give me palpitations and/or tachycardia so best stick to occasional and celebratory drink.

    I don't take anticoagulants and my EP is happy for me not to, the opinion is divided after successful ablation!

    Diet and moderate exercise are also important and I do try to some but sometimes very difficult.

    I am currently doing an off piste treatment - HBOT which is offered by my local MS Centre and that seems to be helping all round but does make me tired after treatment. Just off there now.

    Very best wishes and keep us informed. CD

  • You sound really positive Pete, I'm a firm believer in positive thought and it really can make a difference in your general wellbeing. I seem to feel bad most of the time so I hope my new cardiologist can shine some light on to why I feel so bad.

  • Thanks for the reply it is appreciated.

    I do try very hard to think positively and can do when in NSR. When I am in AF it is a different matter and I cannot control my mind.

    Sorry that you are having such difficult symptoms I do hope your new cardiologist can help you.

    Pete

  • Hi Pete, I've had AF a long time too. Now I'm just a patient, no medical knowledge whatsoever, but from what I've been told by EP's over the years is that drugs for the control of arrhythmias are bit like cooking, they have to try and find which one works for you.

    You only mention two drugs, so I just wondered (probably incorrectly but worth a mention hopefully!) whether this option has been tried.

    First time 15 years ago it was the third drug attempted which worked. Then I had an ablation which worked for 8 years, no drugs during that 8 years. And a few years ago on the return of AF, it was the fourth drug (and a different one) which worked this time. I have bad underlying 24/7 AF but apart from after my ablation, the drugs have always controlled my symptoms almost 100%.

    Just a thought.

    Koll

  • Hello Koll

    About 3 years ago, after one of the ablation failures, they put me on Amiodarone. I had the most unpleasant side effects - severe nausea if I remember rightly. I asked to be taken off of that drug and I returned to Flecainide. As I mentioned in my first post I was on Sotalol to start with but that did not help either.

    Although as I have explained I have been suffering from PAF for 25 years I have found that flecainide and bisoprolol have provided the best (but not perfect) solution.

    Thank you for your comments

    Pete

  • Thanks for sharing your journey with us.

    As someone that has suffered for less than 12 months I found it very useful

    Good luck for the 5th ablation

  • Glad it helped Mike

    I tried very hard composing my post with the aim of not worrying anyone who had only recently started suffering from AF but also telling my story. I am glad you found it useful.

    Think positive and relax whenever you can.

    Thank you for your good wishes.

    Take care

    Pete

  • Hello Pete,

    I like you have PAF for 17yrs now,I am 75yrs of age.

    4 yrs ago I was prescribed Flecainide by Cosultant,to use as "pill in Pocket" only when an episode comes on

    I take 300mg all at once,within 40mins to 2/3hrs I am back to normal.this works for me,never had Ablation or Cardioversion.

    My instructions from Cardiologist is,as Flecainide can take up to 8hrs to work,and if it does not,I have to go to A&E.but never had to,this works for me a treat.

    Since being on Flecainide and using a few pillows when

    Sleeping and try not sleep on the left side,I have not had an episode since a year past March,fingers crossed. (that is using several pillows)

    Keep well Pete,hope you feel better,having found us all in the same boat.I do get on with things and don't bother about AF unless it bothers me!!

    Eleanor.

  • Hello Eleanor

    Your pill in the pocket solution is similar to mine. The difference is I take 100Mg twice a day anyway. What I do if I go into AF is take 200Mg all at once so in total is a similar dose to you depending on how soon it is after my daily dose that it happens.

    Interesting about the advice to go to A&E after 8 hours. I have asked for guidance on numerous occasions and get a different answer each time.

    As I am fully anti coagulated with Warfarin I tend to leave it until the following morning, dare I say also taking into consideration which day of the week it is as I once waited Nil by mouth for 12 hours on a Saturday waiting to be cardioverted because the anaesthetist was busy with "more important cases'. She told the staff to hydrate me in the meantime. I later found out she mean intravenously but they interpreted that as miniscule sips of water.

    I got a headache unsurprisingly.

  • What a tale, and well told!

    All I can add to the many great responses is in regard to your comment about wondering whether "this" is the last episode. It may help to remember that this moment - this very moment, right now - is all you have, or anyone has. Whether there are future moments is not under (y)our control. But we can choose how we deal with this one moment. (We don't have to concern ourselves with how to deal with future moments because they haven't arrived. If another moment arrives, we can decide how to deal with it then. If? That's right. The next moment is not (y)our concern right now; only this one.)

    You've correctly observed that you aren't dead yet. That's a good place to start. :-)

    Having lived (if one can call it that) with disabling symptoms of mast cell activation syndrome brought on by my second ablation a year ago, I can tell you that your best friend is your own mind. The most important thing to do is accept whatever this moment brings (I don't mean you should call it OK, but just to avoid denial). For that, I recommend Tara Brach's discussion of radical acceptance. She wrote a book on the subject but you can listen to her explain what it is and how to do it here: codabone.net/dharma_talks/b...

    Or you can go here codabone.net/dharmatalks.htm and scroll toward the bottom of the page.

    When you get caught up in worry, remember that you're no longer in the present. Once you rope, tie, and haul your overactive mind back to the present moment, just breathe and remember that you aren't dead yet. A tongue-in-cheek approach to this is very helpful. If you simply must consider the future, then you can note that past behavior is the best predictor of future behavior. And now you have a choice: to note that every time you've been in AF you've come back out of it, or to note that every time you've come out of it, you eventually go back into it. This is where your choice lies, to be positive or negative.

    Wishing you happy choices,

    Dave

  • Dear Dave

    I am so sorry to hear about the 'mast cell activation syndrome' from which you are suffering. I had never heard of it before.

    Thank you for your very constructive and helpful comments. I often express similar views to my son when trying to offer him support. He has had severe depression for the past 21 years - since he was 17, and still finds it difficult to cope. As is often the case many of us are very good at handing out advice but not so good taking it ourselves.

    You are right in that I am not dead yet and to be truthful I fully understand that AF in itself is not life threatening notwithstanding the greater risk of stroke we understand.

    As I stated in my initial post, I am soon to have a 5th ablation and having experienced the procedure and the aftermath 4 times and investigated ablation until I am blue in the face I know that it is principally a safe procedure. I also know that compared with other major surgery for example it is a straightforward procedure that bears no comparison to what some have to experience. I think that whenever I have been in hospital with my AF for one reason or another everyone else in the ward has a far more critical condition than I do.

    However, with a 5th ablation looming I recently couldn't help the negative thoughts and my mind started examining my human frailty and mortality, not for the first time.

    This lead me to investigate, not for the first time, my desire for a natural woodland burial for when the inevitable comes to this mere mortal. So a couple of weeks ago we visited a beautiful location near us where this is possible. This visit enabled me to put that particular aspect of my negative thoughts behind me and I have filed the details away to be accessed hopefully only in many years from now.

    Your very kind words have helped me think in a much more positive way and I will do my best to adopt the carpe diem approach to life as often as I can. As you can guess I am in NSR right now and have been for 3 weeks so I have the upbeat mind right now - good time to think good thoughts.

    Best wishes and thank you again.

    Pete

  • Thanks, Pete. You have a great attitude. I especially like that you aren't afraid of looking death in the face. I've done that, and I enjoy telling it, "not yet (ya dirty basterd)!"

    It seems to me that the only difference between my attitude when I have no symptoms and when symptoms run high is ... my attitude. The symptoms - whether AF or mast cell activation - do not affect my mind in any direct way. I let them get the best of me, and the resulting anxiety, etc., is my responsibility. So, how do I want to feel? That's up to me. If I let the moment define ME, then I've lost. You know where that leads, and you know the alternative.

    With heartfelt wishes for you and your son,

    Dave

  • I like your style Dave that's telling him!

    Thanks for the good wishes.

    Pete

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