Constant AF worry

[Elsieclarke]

I'm a newbie. Just out of hospital after a bad AF with chest pain. It happened out the blue on the bus. They have tried various meds over the kast few years but all have had side effects. Took me off the final one in January as it was making my blood pressure too low and couldnt drive. Since then had AF/SVT a few times a month but has stopped within half a hour and no chest pain. Tried to push for an ablation but they want to try one more medication so have been given pill in the pocket flecanide. As the last time came with chest pain I'm so worried about getting another attack. It's taken over my life a bit. Have teenage kids and elderly dementia parent who all need me. Anyone had similar experience ?

[BobD Volunteer]

Hi Elsie and welcome to our forum. You are not alone for sure as we have all been where you are. AF comes with non optional anxiety and sadly this is often not addressed by medics. AF may be in your life but don't let it be all of your life. You won't die from it! It might feel like it sometimes but trust me on that. AF will not kill you.

Living with AF is a long journey but you have some great travelling companions here so buckle up and enjoy the ride as they say. This is you now and you will find ways of accepting this mongrel condition and hopefully one day you will get that ablation. Flecainide is a common anti arrhythmic drug and many people use it as pill in pocket with great results. I'm surprised that this has not been tried before so question who is treating you. Only an electrophysiologist is really trained to the right level for understanding AF so if you haven't already then demand to see one.

Ask us questions and we will try to help.

Bob

[Elsieclarke in reply to BobD]

Thanks for this comforting email. I think they will only let me see an electrophysiologist when they are letting me go down the ablation route. They haven't given me flecanide before as they thought that one time I had flutter but as they can't find the ecg trace for that they now think it wasn't flutter. Im so glad I've posted here and am able to talk to others with this condition. I know afib comes with stroke risk but no been prescribed any blood thinners. Does anyone take aspirin ?

[BobD Volunteer in reply to Elsieclarke]

Elsie yes AF makes us five time more at risk of stroke but there is a test to do called CHADS2VASC2 which assesses your risk according to other health issues so your team may well have decided that you are at low risk. Go to AF Association website and search Chads etc and do you own assessment. There are lots of other good fact sheets to read there as well. Aspirin has no place in stroke prevention for AF by the way. NICE removed it from the recommended list in 2014 so don't waste you time with it. If you need anticoagulation there are various newer drugs apart from warfarin but do check your risk first before discussing with your doctor.

In UK you have the right to be treated by whoever you wish so you can demand to see an EP and that does not mean you are locked into ablation. Just you want the best treatment. IF waiting lists are long then many here pay for a private first consultation to get he best advice and then revert to NHS. There is a list by area on the website under patient information by the way.

[Elsieclarke in reply to BobD]

When you say go to an EP for an inital private consultation do you mean for them to do the investigation with catheters or just an inital appointment to discuss my case/notes ?

[BobD Volunteer in reply to Elsieclarke]

Just to see an expert . Cardiologists are plumbers. EPs are electricians. You have an electrical problem , Why see a plumber? He may try different things before suggesting an ablation but at least you are talking to the right person.

[PeterWh in reply to BobD]

Select category of those who do ablations - that way you will be sure you have an EP.

Contrary to popular myth EPs do not spend all of their time doing ablations nor do they always recommend ablations. They are specialists in arrhythmias - as BobD rightly says the electricians of the heart. They have far more experience and I am sure often will be able to use that experience to make recommendations.

[Rellim296]

So sorry you are having a worrying time, Elsie. We know that feeling about life being taken over.

Flecainide is a powerful and effective drug. I feel the less one takes of it the better, but I rely on it as a pill-in-the-pocket. It always works for me and stops the AF. Thus I'm much more confident than I used to be about making plans, travelling and going abroad. It can also be taken on a daily basis. It's my view that it might be better to be moving towards an ablation and perhaps getting rid of the AF rather than letting flecainide keep it under control.

Do keep a record of when you take it and how long you are in AF. I hope you've had instructions about how much to take and know it's best taken on an empty stomach or an hour before food.

[Peddling]

Hello Elsie and welcome. You are having a tough time at the momen't aren't you, sandwiched between teenagers and a needy, dementia parent. I do sympathise, I'm guessing your stress levels are pretty stretched just now. You can ask your GP to refer you to an EP in your area, but it is likely to take several weeks/months before you get to see one via the NHS. If you check out the AF association website you will find a list of EPs who you can choose to see privately. It usually works out to around £300 max, as they usually want an ECG or echocardiogram done at the consultation. In the meantime, follow Bob's advice re the CHADs Vasc score and, if relevant, see your GP immediately for anti coagulation meds. Meantime investigate ways of reducing your stress levels, be it exercise, meditation, time alone, whatever works for you. Oh, and don't forget to keep hydrated.

[Elsieclarke]

Thanks for this information. Yes was thinking of looking into meditation or yoga. My CHADS score looks like it is 1 so likely why I am not on anti coags. I looked up the consultant cardiologists I have been seeing over the last few years and it looks like one of them is an EP and if I went privately in the area it would be him I would see anyway. So I guess I'll just have to see how things work with flecanide Pill in pocket. I'm glad I've found this forum and this is helping. It's the 1st forum I have ever joined and normally wouldn't do things like this but so glad I did.

[PeterWh in reply to Elsieclarke]

Go and see earlier rather than later so that things aren't masked.

[CDreamer]

Hi Elsie & welcome - you are in the right place for help, advice support and reassurance so please ask any questions you may have.

We have all been where you are now so you may have the benefit of our experiences, good and bad.

It took me 7 years to realise I should have been demanding ( not asking ) to be referred to an EP, unfortunately there wasn't one in our region at that time and our local cardiology dept were downright obstructive about referring me so my GP, who was supportive, suggested I saw someone privately - best money I ever spent! Even though I had to travel to London, Just to talk to someone who really understood AF was an immediate relief and the fact it wasn't a hurried 15 mins consultation helped.

That is why we will all endorse Bob's reply to see an EP as soon as possible!

Best wishes CD.

[Eliza2]

Hi Elsie I too was a constant afib worrier and still have my moments. Looking to 2nd ablation this fall or November and get anxious about that. First ablation went well. I for one cannot take the medications so ablation is my path. Hope you can get tha ablation.

[Elsieclarke]

I contacted an EP on the list in my area. He doesn't do private but has assured me that the cardiologist that i am allocated to he works closely with and trusts her judgement. He said he would have a chat with het when he gets back from his holidays. Has anyone had an angiogram. Ive had a echocardiogram and treadmill test. Someone mentioned they had PAF and they had an angiogram too.

[PeterWh in reply to Elsieclarke]

Ive had an angiogram. The reason my consultant sent me for one was because I am getting pains in the heart at times and he wanted to see if there were some constrictions in one or more of the arteries. There weren't!!! My cholesterol had been high almorvtwo years ago.