My 'not so brief' story into AF and beyond !! (hopefully)

Hi,

I have been monitoring this site for some time now and would like to take the opportunity of thanking each and every person who has taken the time to contribute to it, regularly or not. Sometimes even one little piece of information is the missing bit in the jigsaw puzzle of AF which makes attempting to understand it much easier. There are many medical sites that provide information on AF but they don’t provide personal experiences …. good or bad. It has certainly helped me immensely.

The hardest part is attempting to understand AF ..how it affects everyone individually in so many different ways as unfortunately does the medication given to treat it.

‘Its not going to kill you’ well it certainly feels like it when you have your first experience of AF .. Having a bad leg or bad arm is one thing but the main engine room is something entirely different.

However you do get used to having that ‘bag of ferrets’ jumping around in your chest on occasions and the anxiety does subside ..eventually. .. even when lying on your left hand side in bed.

Here is a little bit of my journey into AF in the hope it provides some understanding and reassurance to others especially those recently diagnosed.

I am a 58 yr. old male, 6’4, 210lbs. BMI is good. Blood pressure has always been excellent as is my cholesterol level. My resting heart rate was always around 60. I have never smoked, taken drugs or steroids. My ChadS2 score is 0 .

I am retired but now work for myself. My previous occupation may be have been described as quite stressful by some, but I did not feel affected by it, although there were many adrenalin highs.

I sleep well and I have no other underlying heart or other medical conditions.

I drink 0 to 20 units of alcohol per week… over a week… never more than that and never more than 6 units in a day (for the past 35 years) I have always eaten healthily .. but I still very much enjoy chocolate and puddings !!

I have played competitive sport all of my life and have trained most days to accommodate that (gym/swimming/running/ etc). I was never an endurance athlete (Triathlete /cyclist etc.)

I gave up competitive sport 10 yrs ago when I required the first of 3 extensive knee operations (short operation- long recovery). I had 3 other previous minor knee operations fit enough but bits keep dropping off.

Following the knee operations I resumed in the gym and I am still there 5 to 6 times per week (weights and cardio). I also walk between 2 to 6 miles a day with my 2 dogs.

Probably 2 yrs prior to my knee operation when I was 46 I had 2 very minor occurrences of what may have been AF (in hindsight) whilst playing sport. Although I had no idea what it was at the time. My heart rate suddenly leapt up quite high for only a few seconds which made me feel a little faint but then disappeared. I thought nothing of it. They occurred months apart on hot days. However at this time I was aware that I had a missing or ectopic beat in my pulse on occasions 1 or 2 per minute.

Again thought nothing of it lots of people have the same. I had also had 2 unidentified nasty viruses over that 2 yrs (12 months apart) which really knocked me for six (not man flu !!)

After my first knee operation (at 48 yrs) I was in recovery for 6 weeks ,none load bearing and laid flat watching my knee go up and down for 8 hrs a day on a machine.

The very first day I was up on crutches I lost my temper. I was frustrated as I was struggling to move about and do things for myself. Well that’s all it took, that sudden rush of adrenalin as I raised my voice suddenly sent my heart into overdrive, it must have hit 200bpm. I was staggering around on my crutches thinking my end had come but then I realised I did not have chest pain or pains in my arm. While I thought that was a good thing I still didn’t feel too clever.

The doctor was called as I staggered into the house but before he arrived my heart rate went back to normal. He checked me out and I was OK. He thought it may be down to being my first day up on crutches after so long. I went back to bed then got up to eat a short time later.

Soon after I had eaten I went back into AF, heart rate all over the place and had a particularly bad night. I was still in AF next morning and went for ECG at the Doctors which confirmed it. I was put on Metoprolol (50mg x 2 daily) and referred to a specialist. The AF lasted about 48 hrs and I saw the specialist a few days later.

I was informed I had Paroxysmal AF and everything was explained. I had 3 friends who had AF but I did not know anything about it… I should have done. It was decided to monitor it and see how it went.

I was left on Metoprolol and had a few episodes of AF in the next few weeks but they became less frequent over the following years. I eventually came off the Metoprolol having reduces it to 2 x 25g as 2 x 50mg made me feel like I was running through treacle. On the reduced dose of 2 x 25mg I had no problems and felt normal apart from a very low resting heart rate sometimes under 50. If I had an episode I would take the Metoprolol for a while and then come of it again.

My AF (apart from one occasion in the gym) has always occurred about an hour after I had eaten on an evening ..at no other time. (Different meals no trigger identified) I would suddenly start to burp quite regularly (not normal for me) which was a tell-tale sign to me AF was about to present itself. The episodes would then last 12 to 36 hrs but that would not stop me doing anything. Although I felt lousy I would still train in the gym in AF.

These episodes could be weeks apart. They could be many months apart. When in AF my heart beat could still be like Morse code, missing beat s and all over the place I just got used to it. It never restricted me from doing anything and I never felt overly tired at this time as these were relatively short episodes.

However 18 months ago after a lengthy period of no AF I was stupidly trying to turn the clock back 25 yrs in the gym on a rowing machine when I went into AF. I resumed the Metoprolol but this episode still lasted 7 days. I trained through it and carried on as normal but felt awful.

Then followed a period of 6 months (2025 into 2016) when I had 2 small episodes of AF (lasting less than 24hrs) until March 2016 when I went into Permanent AF. It came on as normal after I had eaten. I left it 2 weeks on a heart rate of 120 BPM even on Metoprolol before I saw my GP thinking I would come out of it. I was then changed to Bisoprolol (5mg a day)… I stayed in AF but this brought my heart rate down into the 80’s and below. I continued everything as normal hoping it would eventually disappear but no such luck.

Initially Bisoprolol was ok but then it really hit me after a few months .. headaches, heavy legs at top of my thighs, lethargy, feeling of not wanting to do anything , sleeping during the day, the ‘fog’ as people have described it.. hard to concentrate on anything.

I was still in contact with the specialist every 6 months so discussed this with him. His words were ‘you should not be here, you do not really fit the criteria’. Too bad !! unfortunately I do now. I was then booked in for a Cardioversion and put on blood thinners. ( Elquis/Apixaban 2 x 5mg) I had not previously been on blood thinners at any time.

In June 2016 I had the Cardioversion and returned to normal rhythm for 10 days. That was until England played Iceland in the European Championships .. well it was either that or the meal I had beforehand !! Whichever it was, it was bad enough to send me back to AF.

I would just point out that coming round from the Cardioversion I did not instantly feel any better although I knew immediately my heart was back in normal rhythm as rate dropped back to normal. I felt like I had been hit by a truck for 3 days and then it was great !! normality returned but did not last.

Back to the specialist I was then given the choice of 1. Cardioversion with Amiodarone (sorry but not for me). 2, Stay on current medication and do nothing. 3. Change Medication from Bisoprolol to Verapamil Half Securon SR - 1 x 120mg). 4. Have a Catheter ablation.

Initially I thought I could survive on medication and changed to Verapamil . It was a lot easier on my body than Bisoprolol . I was totally against an ablation at this time. However only after reading posts on this site I made my mind up and I began to realise that I should try the ablation asap to give me some chance of coming out of AF, although I knew there were no guarantees. The risk to me was worth the chance of not continuing on medication the rest of my life.

In the meantime I had changed back to Bisoprolol. No I don’t know why either, think it was because I had a slightly higher resting heartbeat on Verapamil (85 to 95BPM) which after consultation was nothing to worry about. My blood pressure has always been spot on throughout even in high AF. I did try 240mg of Verapamil a day but this made me feel tired and did not bring my heart rate down significantly.

I was then given a quick date for an ablation in November 2016 after coming back from holiday but missed it as I had come off blood thinners (Elquis/Apixaban).

I switched back to Verapamil and ironically I felt better than I have ever done in AF prior to my ablation (Heart rate down in low 80’s). Sods law and don’t forget I had taken it previously without the same affect.

So quickly back on (Elquis/Apixaban) and so I had my ablation a few days ago. I would be lying if I said that I was not apprehensive, anxious etc etc (Probably best word to use on this site I could think of a few more graphic ones) beforehand.

The medical team and care was top class. I was in 3.5 hrs and informed prior to the procedure that I would probably remain in AF during and after. I would then have a Cardioversion in 4 weeks, giving the heart time to heal and hopefully put me back in normal rhythm. (I was not aware of this until then).

However as in my pre operation appointment I still got the feeling they were trying to talk me out of the procedure. (I don’t know why but I know others have had the same experience). I have always been asked the question if AF really affects your quality of life then have the ablation. Well it certainly does as I have forgotten what it is like to feel normal.

I was given painkillers and sedated but was awake it really is nothing to worry about. It seemed like 30 mins not 3.5 hrs. I felt slight pain in my chest at times during the procedure and when I told them I was given more painkillers. Apart from that I felt nothing. I remained in hospital for observation overnight.

Afterwards I felt like I had been kicked by a horse around my upper chest and back area. 4 days on on now and the pain has subsided but still feel delicate. I have purposely stayed in bed for 3 days. My groin and hip is sore and bruised at the catheter site but nothing major.

Like AF this procedure also affects everyone in different ways. I certainly could not have gone back to work today and I consider myself fit .. but that has nothing to do with it. I am taking time out to rest and going on holiday for some sun next week (no problems said the specialist). I am up and about today and improving. Others have recovered a lot quicker than me but I refer to Dr John for ablation recovery … and Bob of course.

I am still in AF so my story is continuing like most who contribute to this site. My BPM in permanent AF on Bisoprolol or Verapamil was almost constant. Since the ablation the ‘ferrets are back’ .

I have included a lot of background information which may have been unnecessary but have done so in order to give insight into my personal experience which may or may not resonate with members and help others using this site. My apologies if it does not and has rambled on.

I am lucky, I have been able to maintain my lifestyle throughout AF. I have continued exercising and doing everything I did before I had AF although I do not raise my heart to as higher levels as I did previously. I strongly believe exercise as helped.

After my first episode of AF it almost always re-occurred after eating but only ever at night time. I have identified no trigger factors at all. Chocolate, alcohol, caffeine etc do not and have never contributed to my AF in my opinion. I hardly ever drink coffee and usually drink green and normal tea possibly 2 to 3 cups a day. I have never binged on alcohol.

I cannot tolerate Bisoprolol (lethergy tiredness .. fog !! .. stairs became a night mare not out of breath but dead legged)

I could tolerate Metoprolol and now Verapamil (no tiredness or side effects and no breathlessness)

I am lucky, AF has not stopped me doing anything in my life (yet) but has certainly affected the quality of it …. it’s like carrying a suit of armour around at times and it’s a struggle at time to remain positive about anything, but that could be more down to the medication and not the condition.

Apart from my initial experience my heart beat in AF would probably be around 120 or 130 BPM untreated which I know is a lot lower than some people experience.

I have kept fit all of my life in order to hopefully enjoy a long and healthy retirement but ‘life is s..t sometimes’. Sadly there are many more unfortunate people in the world and as they say ‘AF is not going to kill you’ although it does increase the risk… but so does crossing the road.

On a positive note after my ablation the specialist then said to me ‘ You have done the right thing’. Well let’s hope so and good luck to all those who have decided to do the same.

16 Replies

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  • Rygazz , re the eating, I get exactly the same after a meal. Even though I've had a successful ablation and also the drugs I'm on now work great, they cannot cope with even a normal-sized meal. I have to eat small meals, more often. I sort of graze during the day. Like you, it doesn't matter what I eat, it's just the quantity. I must never fill myself up or anywhere near it. Eating is the only thing I can do that will get through the drugs.

    Interesting story.

    Koll

  • Thanks I am going to try the smaller more frequent meals

  • Well Rygazz.....I've just read your post, and the good news is...I'm still awake!!

    Thank you for your comprehensive account of your AF journey. Of course it is disappointing that you remain in AF, but it sounds as though that was to be expected if you are due to have a cardioversion in 3 weeks or so. It will be interesting to hear what other have to say about that, but as you are well aware....it will take a few months for the heart to heal from it's recent ordeal. Naturally, I hope it will all come good during the lead up to having the CV and stay that way after. Please keep us informed of progress.....and good luck, John

  • Thanks John .. ha ha you should have read it closer to bedtime .. I'm the person you don't want to be sat next to on the bus !! 😄

  • I'm sure you are charming!! All the best....

  • I'm interested to know why you kept exercising while in AF. Also interesting that you were not cardioverted as part of the procedure. I was in NSR at the start but went into AF and had two cardioversions during. Did your EP give you any idea what your chances of success are? I look forward to hearing how you get on.

  • Hi

    Although I felt rough in general at that time In my opinion the exercise certainly helped . GP and specialist were OK with it but I didn't go crazy on cardio though.

    I was in AF at start I don't know why they did not put me into or attempt to put me into NSR but they informed me of that fact beforehand well minutes beforehand. I must admit that was news to me but I believe it is their policy. I was told afterwards that all went very well whatever that means . They did state I may return to NSR on my own but I am under no illusions. My odds on a positive outcome on this 1st ablation were given sensibly at 50 50. No underlying conditions been in persistent AF for 9 months bar a short 10 days after cardio version.

  • Thanks for the travelog of your AF journey which I am sure will be appreciated by many. I guess if you are resting now then sitting writing is quite relaxing so well done. Fingers crossed for you at DCCV time.

    Bob

  • Cheers Bob 👍 Looks like I was tempting fate .. no sooner had I finished war and peace then my heart rate leapt up to 150 Bpm stayed like that past few hours then dropped again.

  • Hi I found your story really helpful and a great insight. fingers crossed for a positive cardio version.

  • Many Thanks 👍

  • Hi, I am a 52 year old woman, slim, vegetarian all my life, never smoked and don't drink and have always exercised.( I dont sound like much fun do i !!!!). Anyway my dad had a severe stroke last February and i was diagnosed with AF last June and put on bisoprolol. It seems to be in my family , all male apart from me. Mine is made worse by stress and 2016 was not a good year. Mine also gets worse every evening and after food. After canceling one ablation through fear and feeling like my AF is not " bad enough" I am now having an ablation on 24th January. I am on blood thinners, which give me stomach ache, in preparation. I am very scared, but my hope is that, as well as not being in AF, that i can come off of all the medication. For me Bisoprolol is like taking a low dose sleeping pill, i have no energy .Please can you explain why you need a cardioversion after having an ablation? Let us know your progress....

  • Hi sorry you have had such a bad year. Like you my AF occurred after food and only on an evening . I sympathise re Bisoprolol initially first few months I was OK but then it really hit me. I know others don't have a problem with it but someone described it as living in a fog and I can certainly agree with that. Ironically like you I nearly changed my mind as once back on Verapamil prior to the ablation I felt quite good no heavy side effects but I don't know if that would have lasted. Time would have past which could affect the outcome. I can't take away the fear but the procedure itself Is really nothing to worry about. I think we all worry if we have made the right decision and only time will tell but as someone commented they don't know anyone who has regretted the procedure.

    I don't know why they did not revert or attempt to revert me back to normal rhythm at the time but that was a decision they made even before the procedure. It was certainly news to me. I was not informed before then and had no significant scans etc but I believe it is standard procedure in that hospital.

    I wish you well and fingers crossed after this you have a better 2017.

  • Thank you, I wish you a speedy recovery, keep us posted and i will do the same.

  • Enjoyed reading your story. Best of luck to you on your recovery. Please continue to share with us, Gracey

  • Rygazz-ypu mention green tea which is well known as a diet aid.not sure how it works but I was told that it is a cleanser. I tried it and after a number of Af episodes after it i read more and realised that if it removed toxins that would include chemical medicines and so any medication would quickly be dispensed with and so would not work

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