Getting worse

Hi All,

Here we go my first post on here. Brief history. Have had AF since in my 20 's and sm now 52. Very rare and short lived at first but as the years have gone past more violent and longer more frequent episodes. First proper diagnosis 5 years ago and now waiting to have the AB op and on Flecanide 50mg three times a day. Given up smoking two years ago, dont drink and have cut out caffeine. I do like chocolate though, will this cause it?

My main question is after all this time of infrequent short violent episodes (once a moth for up to 2 hrs) my episodes over the past 6 months have become every other day and last up to 4 hrs. Usually happen when I relax on the sofa. Have to lay on my right side in bed or it will kick of. HR 85 to 120, dizziness and feel very tired.

Do I get another ECG or wait until after my trip to Papworth in January?

13 Replies

oldestnewest
  • Hi! First of all, welcome! You have found your way to one of the best AF communities I have found!

    I'm so sorry to hear you are struggling with longer and more frequent episodes of AF. My story is very similar to yours. AF started out in my 20s, and I'm now 53.

    My AF has given me nothing but grief this year. Unexplained weight gain, breathlessness when simply walking, exercise intolerance, and just generally feeling awful. I have found that for me there has been no rhyme nor reason to my episodes of AF (it has always been this way), and got very frustrated with more frequent episodes that lasted longer and AF was severely interfering with my life. Cardio switched up my meds, and I'm doing much better. I think a lot of it for me is simply the progression of the condition, and many years of receiving no treatment.

    I can't really speak to whether waiting it out until your appointment in January is something you should do. You don't mention if you are on an anticoagulant? Do you know what your CHADS2 score is? I think I would be most concerned about your risk of Stroke at tbis point. Especially since you are having longer and more frequent episodes of AF.

    Best wishes! - KeL

  • Hello and WELCOME,

    Do you experience heartburn or indigestion particularly prior to an episode of AF? I am convinced that my PAF is linked to ACID REFLUX. Kel is correct you should be taking advice about anticoagulant's.

    Kind regards Tony.

  • I don't get acid reflux, but I'm on meds for that already , but I fo get horrendous burping and a weird feeling in my chest. I have mentioned it but they look at me as if I'm mad.

  • Hi

    Again my story is a bit similar. Palps first appeared as a teenager, but perhaps usual just odd times (11+ exam for example). Then nothing until divorce at 33, as already said, just odd times, sometimes when playing football !! Given valium and inderal. Didn`t appear to make any difference, but decided to come off both meds (valium was not seen as good in those days). After that I never had any episodes that I knew about (ie Pounding heart etc), but gradually over the next 15 years something must have been happening as I remember becoming more tired and irritable. GP diagnosed stress. On a holiday in Portugal an electric shock I received got me to go to a GP and that was the first time AF was mentioned. By that time it was too late and unbeknown to me I was in permanentt AF, which they thought I had had for years and were amazed that I was not being treated for it in the UK. Immediately put me on to Warfarin. Rest is history. Have been in AF 24/7 ever since. No chance of ablation (told wouldn`t be successful). Had 3 cardioversions that put me back into NSR but best only lasted 3 days, and that was with Amiodarone as well, so am on Bisop and feel pretty usless most of the time after midday. Now retired and guess I have this for rest of my life , well already had it for half my life). I had often noticed that when i do feel the AF my stomach feels upset at same time, nobody has ever commented on that tho. None of the people I see annually seem bothered about trying anything different, no tests, nowt.

  • Hello Julian and welcome to the mad house of AF world. Most specialists will say that AF will ALWAYS get worse and there is the old saying AF begets AF. As the heart fibrillates the atria tends to enlarge stretching the electrical pathways and making more AF likely.

    As others have said you MUST investigate your stroke risk as AF renders a person five times more likely to have a stroke due to clots forming in the fibrillating atria when blood is not flowing cleanly. Look up CHADS and CHADSVASC on the main AFA website and work it out for yourself. Many EPs (Electrophysiologists, the specialists in arrhythmias) will say anybody with AF should be on anticoagulant but current guidelines use this score system.

    Regarding what you do now is very personal. Most specialists say that riding out the storm is fine provided that you do not have any chest pain or breathlessness. Going to A and E often involves long periods of waiting around and purely personally I found it a waste of time after my first event. If your GP can do an ECG this may be a useful tool and make sure you ask for a copy so that you can show it to your EP at Papworth. There is no right or wrong answer as we are all different.

    Bob

  • has the flecainide controlled the AF? I too take 150 of fled a day tough I take 50 in the morning and 100 in the evening as that when my heart rate is at its least stable.

    If your AF comes on in the evening its probably linked to your vagal nerve.

    I love chocolate too and do not find that it triggers AF but everyone is different.

    I think the thing to remember with AF its not a condition that you will ever be able to pin down, it may be related to some other heart condition, dietary deficit, hormonal balance ,stress, the causes are multiple and theres no easy way of finding out what is relevant to you.

  • Hi Julian and welcome to our forum. I understand totally how you are feeling with the tiredness. Do you get breathless too? You say your AF episodes usually happen when you relax on the sofa. I wonder if this could be because you are slouching and compressing your stomach towards your heart. The reason I suggest this is because I believe my slouching at my PC or when on the sofa for long periods can trigger mine. Also my episodes of high pulse rate never, ever, start when I'm moving around.

    With regards to eating chocolate and sweets, I have given that up as I always noticed that after eating lots my heart would take off later that day or the one following. I put it down to overload of sugar.

    Have you spoken to your GP to say you are getting more frequent episodes? It would be good if you could have an ECG at your surgery and for that to be faxed to your consultant. That's what my GP usually does.

    Jean

  • Hello Jullian and welcome,

    I emphasis with you as your description of AF when sitting and only able to sleep on your right is identical to me. Mine is worse when at rest, any form of rest.

    Not exercise induced more the opposite. It's when I stop. Although mine is Bradycardic ( low HR) which it appears yours it not.

    As a wise old gent often says...it's a mongrel condition and almost unique to each individual.

    On a day to day basis for me, I have found taking a drink of chilled water straight from the fridge can often stop /control an episode.

    Keep well

  • Hi Julian, I may be misreading your post but it appears that your drugs aren't working. If so, ask for a change. I started on Flecainide which didn't work, then onto Propafenone which worked but had side-effects I didn't like, then another. Fourth time lucky we got a drug that took away 99% of symptoms. I just phoned my EP's secretary and said the drugs weren't working, and he suggested an alternative and issued prescription letter with a day or two each time.

    I have gone tee-total and almost no caffeine but I eat loads of chocolate. But a lot of people do say it's a trigger for them. I only eat dark chocolate, maybe that's different?

    My AF developed over a long period and eventually got really bad and 24/7. Then had an ablation which worked great for 8 years. No drugs at all till recently as I've developed another arrhythmia.

    Hope you get it sorted.

    Koll

    ______

  • I noticed the last time I had AF, when I took a drink of cold water, sinus returned. By accident I did this and noticed this result. Sugarlump mentioned it above so I thought I would say it did this for me this one time. When I have AF again, I will try it again.

  • Hi Julian,

    My first post too.

    If in doubt I'd get an ECG. I had my first AF episode about 18 months ago, then nothing til 2 weeks ago, and had the second of those 2 yesterday morning. What I have done is bought a Sportline Duo 1060 sports watch with heart rate monitor...AND it's accurate, (to

    ECG standards). It means you can monitor yourself, confirm AF then get to A&E if necessary. Obviously I guess we've all become experts at reading our pulses but this watch, (I'm a bit of a gadget man) has already paid dividends.

    Anyway, good luck.

    I'm with you on the young members front too - 47 and sadly waiting for the next. Anyway, have fun :-)

  • Welcome but I'm new here too and so much appreciate the advice from this site....but if your worried get advice and go see your GP re anticoagulant as already mentioned and request the ECG too ....good luck.... :)

  • Hi I am new on here and so afraid having been told I have Paroxysmal Atrial Fibrillation. I do not know what to do other than go on Warfarin and Beta Blockers, however, the Warafrin feels so extreme.

You may also like...