just hit rock bottom, and unsure what to do next?

I was diagnosed with afib just over a year ago. After the initial shock of getting the news I tried so hard to put it at the back of my mind and get on with my life which involves a lot of hiking and biking activities, other than a lot of wind and a dull numb feeling on my left side generally life was good. The meds were working without any real noticeable side effects, as the year past in September last year my meds were reduced and I was taken off warfarin and told to take aspirin 175 mg a day. Which I now know is useless.

Slowly my confidence came back and we booked an holiday in Portugal for may. But now I think I will cancel the holiday as the last three weeks I have been totally light headed and dizzy and on a bike ride two weeks ago I wasn’t feeling well at the start, after 15 miles my heart rate went erratic slow then jumping up to an 100 bpm I carry on for another ten miles where I met my wife .we had booked into an hotel spa for the weekend but decided to make our way to the hospital. The nurse took my blood pressure and mutter something about a missed beat which I was also experiencing on the bike ride I was then given an e c g which the doctor told me was perfect? But seconds before I took my pulse and it was still not right?? He then examines me fully and told me to carry on with my week end break which my wife and I did with no other problems. I did ask him what am I to do if I have another attack as I am not on warfarin. He didn’t seem to concerned. Just said you are not that old and you are healthy just leave it for a few hours to see if it calms down. He even said I don’t know why you are taking flecanide??

A couple of days later after returning home I was woken up with an erratic pulse which frighten the life out of me it lasted 20 minutes but now I am so worrying and I cant think of anything else but having another attack from morning to night. And the thought of having an attack while abroad as put me off going. I am so tired of all the inconsistencies I have seen two cardiologists and five doctors all with different ideas. I just would like a plan of action. I was wondering if there would be any point in going private? And how long and how bad as it got to be before I can be considered for an ablation. As I also suffer from crohns and worry about the meds effecting it. Sorry for the rant but to say I am desperate is an understatement. dont get to see the cardiologist until november

12 Replies

  • Hi llamudus,you sound very simmilar to me although i,m probably older,in 2012 i had been on a bike ride as I usually did especially at weekends and i started to go dizzy my throat got tight and started to pulse right in the centre of my throat.This happened a couple of times over the next few weeks,eventually after visiting the Drs over 3 or 4 times he sent me for an ECG,and then i had a heart monitor fit which i had to wear for 3 days,Finally i was diagnosed with AF and they found my heart missed a beat every now and then.In June 2013 i had a pacemaker fit and in August i had an ablation,Things have improved now although not 100%.I was lucky I had a good doctor who moved things along as soon as he realised what the problem was,some Drs need a push and you have to be a bit more pushy to get things done,so be more ascertive if you are not happy with the way you are being treated,it,s your life and your right to get proper treatment.good luck

  • So sorry to hear you are feeling so awful. We all know how you feel and have been where you are ourselves. I understand your concerns, desperation and fears. I would ask for a referral to an electrophysiologist rather than a general cardiologist so that you get an expert view from someone skilled in arrhythmia's.

    Where do you live. I would look for an expert local to you. Have a look on the AFA website, patients information will lead you to the registered list of electrophysiologists in the UK. Alternatively give the AFA a call on their help line and see what they suggest. It is a great support mechanism.

    Your priority is to get the relevant support so that you can make an informed decision about your condition and then consider your holiday plans. I am a fan of the NHS but in light of your current situation, concerns and imminent holiday plans and the wait for an NHS appointment with an EP I would bite the bullet and pay for an initial consultation.

    Who is managing your Flecainide treatment, your GP?

    We are all here to support you from a patient perspective.


  • I agree with the advice about consulting an EP. I was told to take aspirin, it upset my stomach. The confidence that warfarin gives me is priceless. You need to insist on restarting it. Best wishes.

  • As has been said, go see an EP, no-one else will do, they are the specialists.

    Re the worrying. In my case, even though I didn't feel that worried, it still made my arrhythmia worse and I proved it by taking an anti-anxiety pill (suggested by my GP) one night in the middle of what was a pretty scary attack. It almost went away, not a cure, but it stopped the vicious circle. Having proved to myself, in a "scientific" way, that my concern was making matters MUCH worse, I no longer had any bad attacks and just put up with the little ones that just go away, and I don't take any anti-anxiety pills either.

    But since then, my EP has tried me on various rhythm control drugs and eventually hit on one that's taken all symptoms away (for now), and long may it last (fingers crossed).



  • This is the trouble with AF. It comes, it goes. You get on top of it and then it strikes when you least want it to. You get to A & E and there's not much to show for your panic and you vow never to go again, but you do, You vow never to go away again and then you get confident and book a holiday. It is so fickle and it takes us up and down all the time - and some professionals have no idea how it messes life up.

    The first time I heard mention of AF was the day of my first ablation, Had had palpitations for some years and was referred at that stage. Went into AF during the procedure, but probably not for the first time. Thus you don't have to be a long way down the line to get treatment.

    Agree with Dee and indeed everyone above. Sounds like an appointment soonest for you with an EP would probably move you miles forwards. It is too long to wait until November.

    The more you have AF, the better you learn what it does, when it occurs and how to deal with it - and it does get less frightening, but also more frequent and, for me, increasingly annoying.

  • Great posts Dee. Koll and Rellim.-- llamudos we have all been where you are now and it will get better as you learn more about your condition. If I were in your shoes but with what I know now I would go on that holiday and hang the consequences. It is difficult but you must learn not to let this mongrel condition take over your life. .


  • God bless this forum !! Great replies I will be pushing to see an ep specialist and be a bit more assertive . I kind of made up my mind to do this holiday . Cheers Bob I guess I just needed to hear someone say it

  • Hi. In the end I went privately to an E.P. of my choice. It was the best £250 I have ever spent. Things will feel a lot better to you when you get down to earth information from an expert that you trust . Everything feels dreadful to start with but you will learn how to manage things as time goes on and there are some fab knowledgeable people on this forum as well as folk like me who are have managed to control the beast! Take care of yourself.x

  • llamudos- My advice is to do the holiday!

    I was diagnosed in June 2012(also paid to go private) but know I've had AF for years, just hadn't been caught on record until then. I'm only taking aspirin and have flecainide as a pill in the pocket but have not taken one yet(bit scared to).

    Since being diagnosed I have been to The Maldives(hospitals 2 hours away and then probably very basic ), Egypt, ditto the hospitals, and to Barbados where everything is on go slow!

    I can't believe I was hardly worried about going as I am a super worrier but I thought as this has been going on for years and it hasn't got me yet I might survive a couple of weeks away and somehow I carried on regardless.

    My advice to you is to keep really hydrated in the heat and don't drink very cold icy drinks when you're hot to avoid the shock, otherwise the relaxation should do you good .

    If you are thinking of going the private EP route, look up all your nearby hospitals, go through their cardiologists and check to see if any of them are an EP. They all have private practices too so ring their clinic and book an initial private appointment(~£200), you will probably be told you need an ECG and blood tests to start (~ £80+£80) then an echo plus a follow up EP appointment . My total for that lot was £1300 in July 2012. Then hopefully the EP should add you to his NHS patients so any further tests and appointments can be on the NHS.

    Good luck.

  • Yes, just remembered I did the same as dedeottie. I was getting nowhere slowly. Saw the GP over and over again, everything was fine, just stop worrying etc, etc. Sorry but I'm one of those people who will stop worrying, but only when I actually get some action! So eventually I just asked for a referral (an open referral???, can't remember details) so I could see an EP privately. Saw him twice pretty quickly at £150 a go, and like dedeottie, best £300 I've spent in my life. He had a monitor fitted, told me what was going on and I then had work done, by him, on the NHS, just had to pay for the private consultations (10-15 minutes each) to get the ball rolling. It shouldn't be like that but it is.


  • Money always talks. I would not be running down the road to have an ablation unless it was absolutely necessary. Should you really want to go down the ablation road ask you Cardiologist if he (or she) would do it if they were in your place. The good and honest ones will give you a direct answer, the others will talk around it. This is only my opinion, but I have been down this road not only with different Cardiologists, but different Cardiologists in different countries. JH

  • Hi Llamudos, we all understand where you are coming from, it is a scary condition, certainly at first, though it does help a lot when your brain finally takes in that it's not going to kill you. If I were you I would look on the AFA website and do my CHADS2VASC score, which will tell you whether you are at any risk of a stroke - if you are young and otherwise healthy (sounds like you're very fit!) you may have a very low score. I'd agree with the others about pushing to see an EP (though I haven't!), but if your cardiologist and doctor aren't helping then it would perhaps put your mind at ease. It is a condition that comes and goes and you get used to working with it - I've been to South Korea and Amsterdam since diagnosis and been fine. I hope you get help soon - take care,


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