Oh No! is getting worse - now had 2 episodes in one day - need a hug!

Feeling really fed up and anxious again - My Paraxysmal AF episodes have now suddenly dramatically increased over the past 2 months, and are trying to take over my life.!!! I used to get one lasting 2 - 3 hours every 8 - 10 weeks. Since January this year I have had 30 episodes. Last summer went nearly 4 months without (thought I was cured) !) Since March have been getting 2 to 3 times a week and this week every day. But yesterday had 2 in one day!!!! 3 - 5.30pm and 10 - 11.30pm never had this before - still they last 2 hours. They just come on, no known triggers.

I saw my GP in March and explained what was happening asked to see Cardiologist asap. Cardiologist replied to Dr (not to me) said as I have my annual appointment scheduled in June, no need to see me before then, and that I should increase my Flecainide from 50mg x 2 per day up to 100mg x twice a day. He has also referred me to St. Thomas's London for assessment for ablation.!!!

I have had AF since 2006, went through various combinations of drugs until 4 years ago, finding Flecainide and Verapamil combination seemed to have no side affects. I take Warfarin as well. BUT Don't have any evidence that Flecainide works in reducing episodes. I have wanted to stop daily Flecainide and do PIP but he insisted keep taking it.

Cardiologist says it makes the episodes less violent ( I used to have really huge palpitations that felt like my chest would explode, but never any pain though, was very scary. Now my episodes are very irregular heart beats, big palpitations and missed beats then fast, then big and so on - horrible. Slightest exertion, makes it worse, when at home, I lie flat on bed. At work is very difficult I try not to move very much - but it always takes longer to convert to sinus can be 4 hours.

Currently when I have an episode I take one 50mg tablet as extra ( so 150mg max per day) have even tried not taking this extra and it makes no difference. So, Really reluctant to now double up my dose on a daily basis to 200mg. Guess I will have to and see what happens.

I'm 62 years old, still working full time - office manager, not overweight, well controlled BP 124/75 and pulse 65, and no other health problems ( no heart disease).

Have discussed Ablation with Cardiologist many times over the past 9 years, each time he said that he felt my AF was not severe or debilitating enough to warrant Ablation with the risks involved! Now of course, I feel that I don't have any option but to seriously consider it. How long do you think I will have to wait for the consultation at St.Thomas's then how long the waiting for operation?

Sorry hadn't intended on writing so much, feeling low and in need of support right now. Trying to be brave play it down and not worry husband too much as he has very stressful job and suffers from stress.

28 Replies

  • You sound like me to tee! My AF attacks used to be huge - no middle ground it would either be no AF or it would kick in and quickly escalate to a MAJOR event. All the things you talked about - heart jumping out of my chest, just standing up would escalate it immediately, if I wanted to walk to the bathroom or kitchen I would have to shuffle along at quarter pace because my heart was going so berserk.

    Used to be that as soon as I felt a flutter I would get my hospital bag in order - change of clothes, toothbrush, phone charger - and then lie down hoping that it would stop. Sometimes it would, usually it would balloon quickly and I would be calling the ambulance sooner rather than later.

    My meds were increased which helped for awhile but they started to creep up on me again and I truly understand that sinking feeling as you realise the AFib is winning.

    I started magnesium supplementation in January and have had 3 AF events (I would not even call them attacks) in that time. 1 which lasted about 10 mins, another which went for about 6 hours but I could still go to work and one last night which was so mild I had to keep checking my pule to see if I was in AFib or not - very strange for me because usually when I am in AFib I can tell immediately.

    I think the magnesium has helped greatly in reducing the number and severity of my attacks. No hospital visit in 5 months (and counting) is quite remarkable for me.

    Of course you may already be supplementing with magnesium - apparently up to 90% of us AFibbers are magnesium deficient and magnesium is the key mineral needed to keep our hearts in rhythm - but if not I'd strongly suggest you consider it. Feel free to email me if you like :)

    Ad yes I feel your frustration. This disease is a real p in the a!

  • Hi Wendy. Dave says "You sound like me ----" This is exactly what I thought when I started to read your post. Originally I resisted ablation but my AF got so bad that life was hardly worth living and I had lost confidence because I never knew when I was going to feel too rotten to function.

    Your Cardiologist lacks understanding" You need to see an EP asap. If ablation is not an option then at the very least you need a drug review.

    I had my ablation last August. I'm 95% better and Flecainide works quickly as a pip.

    Next week I'm off to the USA to see my youngest son marry his American fiancée. This would not have been possible had I not had the ablation.

    Ver best wishes.

  • Did you have AF or PAF before the ablation?

  • PAF. But when I first saw my EP he said that he thought that I was fibrillating more than I realised. This proved to be true as a 7 day monitor picked up a 36 hour episode which did not correspond with my diary record. I often think that people may well be having AF whilst they are asleep and never be aware of it.

    I had arrived at a routine cardiology appointment in AF and I was so traumatised by the journey to see the EP that it brought on a really bad episode. This meant that they had 2 lots of ECG print-outs with me at my worst.

    Post-ablation my episodes have been very mild and easily controlled by 100 Flecainide as a pip.

  • Hi Wendy and sorry you are not being treated properly. I'm sure that you will have been told before that AF always progresses and I think you are well past the time when you should have been referred to an electrophysiologist for ablation. If the drugs are not working I agree it is strange that this has not been done before. Why wait till it become persistent rather than paroxysmal and more difficult to sort out. If I were you I would make a private appointment with an EP of your choice asap and see what can be done for you. Cardilogists are not the best people to treat you as only an EP is the specialist. Why ask a plumber to re-wire your house?

    In my view there are greater risks now in NOT trying ablation . Yes there are small risks but very very rare and there are risks in doing nothing. The difference is that nobody yet sued a doctor for doing nothing.


  • BobD,

    Have you had an ablation and are you now living without AF and medication free?

  • Had three and AF free last seven years. No anti-arrhythmic drugs but do still take warafrin as I believe it is important. Not having AF doesn't remove the risk.

  • Sounds like the drugs aren't working, so they're the wrong drug for you it seems. Flecainide didn't work for me and my EP took me off it and changed to another drug by email within about 48 hours. Biggest problem I had was getting the GP surgery to issue the drugs based on an email, but they did, just the once. I actually went through 4 drugs to get the one that worked for me. They're all so individual and one that works for one person doesn't for another, or may have unacceptable side-effects on one person and not another.

    I got in touch direct with my EP's secretary at the NHS hospital first by phone and later by email which she preferred.

    My AF was really bad as well, I've had the violent shaking which is very scary. I actually took an anti-anxiety pill in the middle of one terrible bout, and it virtually stopped :-) . That proved to me that my anxiety/mind was making things much worse, which was interesting and useful to know.

    Hope you get it sorted soon.


  • Hi Wendy,

    Virtual hug sent to you! you could have also been describing my symptoms a few months ago! Go for an ablation you will not regret it! AF takes over your life if you let it.Medication is great if it works but the side effects are sometimes worse I think.

    Good luck,

    Wendi x

  • The best hug I can give you is a recommendation to eat more natural fat, with a corresponding energy reduction in carbohydrate, lowering the Gi and minimising fructose intake.

  • Hi concerned, your response is very interesting. I have been trying to lose weight and have been intermittently on the 5:2 diet. for the past few months. On my fast days I have a high intensity mix of pulverised natural fruit (NutraBullit) with extra minerals, includes linseed, Chai, pea protein, so will be high in fructose. Have this for breakfast/lunch then a low fat low carb dinner, lean meat and lots of vegetables. Last week had this every morning but one -Could the high fructose be a trigger!???

  • Wendy, I know that others may disagree but personally I don't think that consuming only 500 calories on a fast day helps AF & may even promote episodes. Just my opinion & experience.

    Your post certainly ' rung bells ' with me! I find that I have to move as little as possible or move very slowly & deliberately when an attack starts. If I wake up in the early morning with the familiar feeling of an imminent attack, I ' freeze ' & sometimes this will prevent a progression.

    It sounds like you have suffered long enough & ablation is the way forward.

    Regards Sandra

  • And lean protein is the fastest way to deplete your liver of vitamin A; too much protein can be turned in glucose, with nasty side-products including ammonia and uric acid that the body then has to cope with.

  • Thank you all for your replies which have helped me this morning, as I wonder what the weekend will bring, and trying to decide whether or not to increase Flecainide!!!!

    From advice given on this site, 8 weeks I also started taking Magnesium Taurate 125mg x 3 per day. For the first month I went 3 weeks without an episode and thought great, this it! Then I had a few episodes but they were very mild and lasted only 45 mins - hour. However last week episodes came back as every other day. and this week they are stronger again and more frequent lasting 2 hours or more.

    Perhaps I'm not taking enough, what do you all take daily?

    I have asked my Cardiologist to review and change by meds on previous occasions, he said no, as he believed that my AF is controlled, and changing would upset this. Well I suppose it was, but certainly isn't now.

    Electrophysiologist - yes I know - Koll I presume you were seeing EP privately?

    but how do I go about this, ask my GP to refer me?

    Or do I find them myself through BUPA???

    The letter from Guys and St Thomas Hospital to my local Cardiologist was from a Consultant Cardiologist not EP. Does this mean I wont be seen by an EP for Ablation Assessment?

  • Wendy.

    Bob's comments very sound and was thinking the same till I got to his post. Probably you should have been referred to an EP before now but there's no point worrying about that now. You are at where you are at (and we all are to an extent) and you can't change the past!!!

    However I would check to see if the cardiologist at St Thomas' is actually an EP by looking on the main AFA website (titles are often misleading - my consultant's title is "Consultant Cardiologist and Electrophysiologist" and I have seen it shortened to Consultant Cardiologist). If your new consultant is an EP then great and phone his secretary to see likely duration to appointment. Some London hospitals are endeavouring to see referred heart patients in 2 to 4 weeks to do an assessment by consultant or their registrar. If he is not an EP then I would suggest that you do NOT cancel that appointment or make comments to the hospital but look at specialists who do AF ablation at Guy's & St Thomas' NHS Trust (some are listed as one or other, some both of the hospitals and there are quite a few). Do a bit or research on each one and then phone their private secretary. It will be easier to be "slid along" within the same trust rather than starting afresh. If you are going to get an appointment quickly with the consultant then it may be easier to get him to refer to an EP.

    After my ablation I went back into AF within 72 hours. My consultant referred me to a heart valve specialist as I also have moderate to severe leakage in the tricuspid valve. When I saw my EP I told him that the appointment was not for 5.5 weeks and what about me seeing valve specialist privately for the first time. My consultant said as it was that short it probably wouldn't be worth it because I would have to drop out of NHS for that procedure and get GP to refer me to see consultant privately, have the private appointment which could take a couple of weeks, get the assessment and letter back to GP and then be referred back by GP to the NHS.

    Hope this all helps.

  • Bless you I know exactly how you feel. The symptoms of your AF are similar to mine and they are not pleasant and are damn scary when you are on your own.

    I elected for drug treatment as apposed to an ablation when I started in 2007 but my episodes have started getting out of control. Mine used to last a couple of hours, same as you with no trigger factors, but my last one was 35 hrs so am now awaiting an ablation.

    I was really scared about having this done, but after reading lots of stories on this site, I feel more at ease.

    None of my meds seem to work, as like you I'm meant to double up on Flecainide when in AF but it doesn't work.

    I would say go for the ablation if you can as I've finally realised how much this is affecting my life. We were meant to be going to Greece for all of June in our motorhome but now I daren't go abroad.

    This site has helped me. Just realising how many of us are struggling and sharing our stories and asking questions and knowing that you are not on your own with this.

    Denise. X

  • Hi Denise, thank you for your reply and support. have you been for your Ablation assessment are you on waiting list? We also have a 2 week holiday booked for Greece 1st July, have been so looking forward to it. Historically I feel great and usually only 1 mild short episode on holiday ( during the night) and that down to too many cocktails!!!! I always take Rehydration powders with me and take every night which I think helps to balance electrolytes. The thought of not going away this year is not bearable - I'm going!!!!

  • I am 59 and have also recently seen increased episodes. I use PIP to treat them. Generally this reverts me to sinus rhythm within 60 minutes. I am considering having an ablation. I am uncertain about the value of taking Flecainide daily. I use 100mg Flecainide and 25mg Metoprolol for the pill in pocket treatment.

    I notice a few posters here advising to take a doctor's advice. There is no law that forces you to do this. Just the example of you on daily Flecainide and me on PIP indicates that both patients and doctors are different. Getting second or third professional opinions can be worthwhile rather than "obeying orders" of a professional whose advice is based on his/her personal judgement. The medical profession is not God-like in its ability to choose the right solution.

  • I strongly suggest magnesium. I take a magnesium bath everynight and I take a supplement called Arterin formulated by Dr. Chaucey Crandall that has magnesium as well as niacin, Vitamin B6 Folate and Malic Acid. It has done wonders for me.

  • Sorry you,are having a bad time Wendy.

    I have Paroxysmal AF now for 16yrs,similar position to you,with no heart

    disease,active 74 year old this year.

    I was prescribed by my Cardiologist 100mg Flecainide am.and same again pm,as my PAF was not getting more frequent but episodes lasting much

    longer,usually went back on it's own after 40mins to 2hrs.

    Well this daily dose made things much worse,just like yours.

    Got back to Cardiologist,she changed the method of using Flecainide,daily,

    to "Pill in the Pocket" 300mg Only when an episode comes on.

    Have not had an episode in 3 months,wonderful drug when used to suit

    the individual,maybe you could check this out with your Cardiologist not

    Through your Doctor.

    Try not to think about episodes,once you are over it ,this is what I do,tell

    Your Heart off and try to get on with it.Hope this helps,would love to hear

    How you get on.


  • Thank you so much for all your support and comments - after a horrible unsettling week, I really needed this and a hug! and I even got a few virtual ones. I have been arguing with my Cardiologist for many years that I wanted to try PIP he always advised against. I do not have much faith in him, he wrote me off as nothing more he could do for me, a year ago, he didn't want me to have annual check ups with him , but I insisted that I see him at least once a year!!! However, my situation has since changed. perhaps he will re-consider.

    I am seriously considering making a change now - really do not want to increase daily Flec dose to 200mg a day. Looking at all the advice I have had to day - Im going to reduce Fructose as was eating a lot of fruit each day on my diet. See how that goes -

    will up my Magnesium dose as well. If Im going to do the PIP will have to take the plunge as and see how it goes for a week. I am a very positive person and since start of AF in 2006 have managed to get on with life and not let it affect what I do. I am determined not to let it take over now!!!

    THANK YOU ALL for support

  • Glad you found everyone's comments useful and reassuring. If you are under an EP he will become defacto your main cardiac consultant. In the unlikely event that you actually did need to see another cardiac consultant you could always ask that it is someone at St Thomas' so that the heart care is at one place and joined up. Whichever happens you can "drop" the other one quietly. (ie don't need to say so)

  • I Had a mini stroke 6 years ago in Malaysia, am on Warfarin, I have AF, not been a problem till the last few months,I was in A and E last week, heart rate was 170, very scary, I am now on Betta Blocker, but still getting flutters and still fast on occasionally apparently I have an enlarged heart so probably wouldn't qualify for Ablition, I feel I'm on the scan heap !!!!!

  • Your heart is probably "enlarged" because of the AF and this can often be reversed after successful treatment. Don't write yourself off just yet. See an EP and find out what could be done.


  • Have you been investigated for the presence of a phaeochromocytoma? This usually benign tumour can be the cause, and is seriously underdiagnosed by doctors these days. It is usually found now post-mortem.

  • I had 9 episodes of varying length in March 2014 even on 50mg Flecainide twice a day. Agreed with Cardiologist prior to an ablation we should just try 100mg Flec twice a day and that worked. Still didn't feel that good until started Mg supplement and then CoQ10 (prescribed by an experienced Alternative Practitioner & approved by my cardio) plus other lifestyle changes.

    It can work as have just had one episode in 13 months and that was when I tested a known trigger and proved it still is a problem.

    Good Luck!

  • Thanks for your reply. What type of mg supplement and what dose are you taking also how much CoQ10?

  • I am on Nutri Muscleze Ultra which is a mix with other good AF stuff e.g. Potassium, Taurine ++. Over 9 months I have averaged probably around just over 1 teaspoon per day split between am & evening.

    On CoQ10 (mine comes in 100 & 200mgs capsules), I have probably averaged 125 msg per day over the same period, as I started on 100mgs and had some gaps and then went onto 200mgs - I am a very cautious pill and supplement taker.

    Currently awaiting the blood retest results to see if this dosage has raised my levels fro bottom of the range last August.....will post here when I know.

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