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A successful treatment for Atrial Fibrillation?

Posted , 8 users are following.

EssexDweller
EssexDweller

I am in my early 60's have had periods if irregular heartbeat over about a 6 year period.

When I get AF it sticks and doesn't stop. It will go on for months causing sleepless nights, anxiety, weakness and a depressing feeling that one's heart can't possible keep working at this rate for much longer.

The system in my area is to give AF sufferers warfarin, and put them on a long waiting list for a cardioversion. They are geared up with staff employed to do this - check your warfarin dose, do the cardioversions etc. as though this is the only way to tackle AF.

Over four years I had four cardioversions and they offered a temporary cure as long as I kept off all the triggers - in my case no alcohol, caffeine, heat or over-exertion. I would always be worrying about that moment when I would slip into AF and have to start all over again.

I was sent by the GP to the hospital cardiac people. In my area they have a new cardiac unit so this sounded promising. But the doctor I saw seemingly randomly changed my medication to two drugs which put me in A&E because of their awful effect. The doctor who sent me to A&E said these two drugs should never be given together. Unbelievable but true.

I then got a referral from my GP to see the hospital electrophysiologist about whether an ablasion would be a good idea in my case. He basically was against it and frightened me off with statistics about how many people get punctured lungs, strokes, death during the operation, low success rate etc. Yet I read of people who have had successful ablations - like Tony Blair for example, so why the put off?

I then paid to see a recommended cardiac surgeon who did an angiogram and found everything fine and put me on a course of Amiodorone prior to giving me cardioversion on two occasions. Amiodorone is very nasty stuff and I am not convinced it did anything to help my heartbeat. It can damage the retina and lungs, causes you to burn in sunlight and it gave me nightmares. I decided that this wasn't the answer either.

At this stage I was getting resigned to having me life curtailed to living like this. Then I read on one of these forums about a man in the US who described exactly my symptons and said that when it happened he took a 'pill in the pocket' treatment of Arythmol.

I asked my GP if I could try it but he refused saying that he wasn't a heart specialist. I then got his referral and paid to see a different cardiac specialist. At the time I was in AF which he looked at on the ECG. He changed my beta blocker to Sotalol, which not only reduces blood pressure but stabilises the heart rythmn. He also prescribed Arythmol 300 mg (Propafenone) for me to try as requested. I took one tablet, waited and hour and took another and within 4 hours my heart was back in sinus rythmn.

Since then I have found that Sotalol 80 mg twice a day is pretty good at keeping me ticking normally. I can drink beer in moderation but nothing stronger. Tea and coffee sends me into AF, so I avoid all caffeen. I can even have saunas now. Occasionally, I slip into AF, usually as a result of a trigger, but not always. When it does I take one or two Arythmol tablets and it goes back again after about 4 hours.

So life is now good again. I realise that the heart is a complicated organ and what works for me might not work for others, but I do wonder why, when people don't first go to their GP with AF, they don't at least try them on Arythmol to see if it works.

Do ask about these drugs if you are in this position.

2 likes, 7 replies

7 Replies

  • f3redblue
    f3redblue

    Posted

    In 2 weeks I'll be in the hospital for 2 days for taking sotalol drug before the cardioversion...should I follow through? I've had the 1st cardioversion but only lasted 3 weeks :-( Now dr. wants me to take sotalol for 2 days. I've been reading up about sotalol and I'm thinking of NOT go through it. What should I do????? I need answers fast before March 9th (2012). Thank you
  • EssexDweller
    EssexDweller

    Posted

    I am not a doctor so I can only comment on personal experience. However, my experience is that no doctor knows my heart condition as well as I do, and I have been singularly unimpressed with the majority of the so-called 'heart experts' who have attempted to treat me, some of which I paid large sums of money to for private appointments.

    I recommend everyone to research the condition that they have and the drugs that are available, and offer your interpretation when discussing your condition. Don't expect your GP to know much at all, and expect old fashioned knowledge and prcesses from those working in hospitals.

    I take the Beta Blocker Sotalol 80 mg twice per day. It regulates my blood pressure as well as my heart rythmn. I have had no side effects and I am convinced that it redcues the incidence of occurence of my 'flip's into irregular heartbeat.

    If I do slip, and it can happen for any reason - but can be linked to a trigger - I take a 300 mg tablet of Arythmol and I am back again in sinus rythmn in a few hours.

    I wouldn't want to have any more electric shocks. In my view it is primitive, dangeous because i can shake up clots, and only lasts for a time, then you'll be back for another one. Don't let them dose you with Amiodorone beforehand. It is nasty and I am not convinced that it makes the cardioversion any more lasting.

    Good luck. Be in control.

  • f3redblue
    f3redblue

    Posted

    Thank you for your information...I'm seriously thinking of not going through with it. Will talk to the dr. about what I need to do if I don't want to have the 2nd cardioversion with sotalol. I'm a little scared about it. Do you know of anyone who had this done beside you? Thank you :-) Deb
  • EssexDweller
    EssexDweller

    Posted

    Deb. I can't advise you. I can only speak for myself. The heart is complex. There are many underlying conditions that cause irregularties, be they fast, slow or irregular. Doctors seem good at finding these things out. I had an angiogram which showed that there were no blockages, and other tests to show my heart was basically OK. So it isn't clear what causes it in my case.

    In my case, twice-daily, lowish-dose sotalol proved to be a great stabiliser and Arythmol does for me what a cardioversion does for others.

    I don't understand why they don't try Arthymol first, but there is probably a reason. It is worth asking.

    I have had 4 cardioversions and came out with a really strong sinus rythmn each time, but not drugs were ever prescribed to prevent it happening again, and one time it went back to irregularity just two days later. Why didn't they give me sotalol if they know it can stabilise the beating mechanism? I don't know.

    But I can look back on it now and know that my experience of doctors dealing with this condition was not a good one. You tend to get 'processed' through an established procedure. The knowledge of available drugs by GPs and doctors specialising in heart conditions doesn't seem to me to be very good in this country - in one case I was put at grave risk by one 'specialist's' seemingly random choice of two new drugs that should never be given together.

    You do need to find the right specialist to advise you because your GP can't advise you on this. Many like me have to pay for this. I paid a very large sum of money to one 'specialist' who then only seemed to know about Amiodorane and electric shocks.

    In the end I had to pay money to go to a specialist simply to ask him to prescribe me Arthmol which I had read about on one of these forums - because my GP wouldn't. Luckily for me it works otherwise I would still be living with constant AFib with the odd electric shock every now and again, and then another wait until it happened again. I now lead a normal life without that fear.

  • BStanding56
    BStanding56

    Posted

    Thank you Essex dweller for your input, I have had about 4 cardioversions and two ablations the last one in December. I am on amiodoryn and Losartan for blood pressure, my AF seems to be much better especially the past 6 months, however I get to feel so exhausted especially if I try do do a good mornings houswork or go shopping at times wonder if I will get back to the car. I see my consultant on the 21st (next week) I hope he will change my medication, and can give some explanation of why I continually feel exhausted.

    Beth

  • CroydonGeorge
    CroydonGeorge

    Posted

    Dear Essex Dweller, thanks for your comments. I would be most interested to find out how you are doing of late. (24 Feb 2014)
  • jess101
    jess101 EssexDweller

    Posted

    Female - early sixties.

    Thank you EssexDweller for sharing your experience.  For 4 years I had horrible similar symptoms to your own and also passed out several times which I found very distressing.

    Six months ago, I finally saw a Consultant who recommended a Cathetar Ablation but in the meantime, while waiting, he prescribed Flecainide (2 a day), along with my usual daily beta blocker Bisoprolol and small Asprin. He said if I was lucky, I would have no side-effects and if I was very, very lucky, I might not need the operation.  In fact, this is exactly what happened...... I can't belive how well I have been since and feel I have been given my life back and I am so very grateful.  I agree with your comments that each of us can have quite different experiences and some people won't be so lucky. 

    I hope you are still keeping well.... your Arythmol tablets are still doing their job.

     

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