27, female, diagnosed AF, on flecainide, need some help with symptoms.......

[chogg07]

Hi everyone, hoping you all can help, around 5 weeks ago i collapsed, came round to a very irregular heart rate, unable to stand for dizzyness and felt realy poorly. NHS24 sent me to my local A&E where it was discovered i had AF. Doctor still undecided what kind of AF it is. After nearly 2 days of being connected to monitors they decided to put up a drip and intravenously return my normal heart rate. This worked. AMAZING.

I left the hospital on 50mg of Flecainide twice daily. No blood thinners (even though ive had previous blood clots in my lungs). Since starting the Flecainide i have felt constant exhaustion, cant walk far or do anything too physical or im out of breath, feeling dizzy, constant need for sleep. Im also experiencing chest pain, dull pain, not sharp, more like a tugging. Pain runs under armpit and around to my back. Im really fed up as im only 27, have two young children to run after and i feel really weak and frail and this constant tiredness messing with my life.

Sorry i should also add that the episodes of AF are much better, maybe once or twice a day but only lasting between 30seconds to 1min. which is good isnt it? Unless of course i move around the slightest bit too much then my heart rate races and the symptoms come on bad! Echocardiogram been done, yet to get results.

Ive been to my GP, she doesnt seem to be listening to me and blaming all this on grief, sadly i lost my 11 year old daughter just 4 months ago. She told me to slow down and be patient. Im not seeing the consultant till June and cant go on another 2 and a half months like this. Can any of you help?

Charlene.

[BobD Volunteer]

Hi Charlene and welcome to the forum. WE all understand what you are going through and yes it is bloody scary. When I started my AF journey ten years ago there was nothing in the way of support. It must be really bad for you after loosing a child and I'm not surprised that you are in grief which may have had a contributing factor in your AF.but is not a cause. You obviously have a predisposition to AF -- probably genetic.

My first comment is to suggest that you ask if there is a rapid access chest pain clinic in your area and pitch up there one day complaining.. With your history you need to be taken seriously and not fobbed off with platitudes. You may think about changing your doctor if she isn't prepared to offer more support and help. There are many different drugs you could try but sadly they all have some side affects and I suspect that some of your problems may be the flecainide.

Never mind what kind of AF you have, AF is AF! The only difference is if it is paroxysmal (comes and goes) or permanent so either doctor is stalling or doesn't really understand the condition. At your age you would be a prime candidate for ablation (look it up on the main website) so an appointment with an Electrophysiologist rather than a plain old plumber type cardiologist might be a good idea.

Regarding anticoagulants and please don;t call them blood thinners as they don 't., they just slow down the clotting process, there is a chart know as Chads2 (again check out main website) which tells if you should be on antiocoagulation but in my humble opinion if you have had thrombi anywhere and have AF then you probably should be on warfarin or similar and note aspirin is of no value in AF unless you have another cardiac condition which call for it.

Do read as much of the information available on the main website as possible as knowledge is power and in this game you need to manage your own situation for as you have found . treartment is patchy.

Any specific question pleased aks and somebody will be able to help.

Take care and remember you are not alone!

Bob

[chogg07]

Thanks very much for the speedy reply, I have done my CHADS scoring and im getting a 2 and a 3? so suggests im in need of anti-coagulation therapy? Do i present this to another GP and ask for there opinion? sadly there is no chest pain clinic in my area but im going to try approaching another GP with my concerns. I agree that ablation is probably the best course of action in the hope of a cure for this condition. Well at least for a good few years.......

The symptoms im describing are that of AF alone aren't they? Of course from reading other posts on here it seems the flec can cause the extreme tiredness.

I agree, someone who has had a pulmonary embolism previously and sent home from hospital with AF is at more risk of a stroke surely! The consultant in hospital just kept saying "your young and fit, you will be fine" VERY GOOD! Kind of ignorant to be honest, what 27 year old does anyone else know that has had previous blood clots in the main arteries of her lungs and now has a heart condition and he classes that as "not needing worried about" HHMMMMM.

Thanks for your help. Im kind of lost here, was thinking im just going to have to put up and shut up but no im not going to! Im young and i want my normal life back!

[Hidden]

Very sad to hear about you loosing your daughter Charlene, there can't be anything worse than losing a child.

Stress was the trigger that brought my AF to the fore. I was diagnosed with AF like you, couldn't stand, dizzy, I felt I would faint if I stood up sometimes, was rushed off to A&E then put in a coronary ward where they monitored me and tried different drugs till they got the one that worked for me.

I then had two years on drugs without AF but had side-effects which were ruining my job (mainly VERY poor memory). So I had an ablation, which was a breeze, and that solved the situation for many years in my case, and no more drugs till recently, 10 years on.

Back on drugs again now, different ones, but I haven't put up with second best. I've tried about 4-5 lately, and each one had different side-effects or didn't work well enough. Eventually they tried another one which is working very well and actually (so far!) with no meaningful side-effects (just slight constipation etc). What I am saying is that if I had the side-effects you were having with Flecainide, I would want to try another drug, in fact I did. I don't think your GP is allowed to prescribe rhythm control drugs, it needs to come from the cardio/EP.

You need to be referred to an EP (Electrophysiologist). They specialise in the electrics of the heart. In my very humble opinion (I'm just a patient) that is a must and personally I only take advice from my EP.

I have a CHADS score of zero, by the way, and my EP has, quite rightly, put me on Warfarin some years ago. I love your last sentence which is the attitude you need with AF.

Best wishes

Koll

[jeanjeannie50]

Charlene, I've just had a little weep for you. I'm so sorry to read that you lost your daughter recently.

I can't really add to the good advice already given above, but please, please don't think that you have to put up with chest pain. When you next get it I would suggest you go straight over to A&E or call an ambulance. Also If there are several doctors in your practise, please go and see a different one. Lastly welcome to our forum, the people on here are fantastic and amazingly supportive so do not hesitate to ask any questions - no matter if you think it a bit daft or trivial.

Big hug.

Jean

[meadfoot]

Hi Charlene, So sorry you are feeling so poorly and so sad about the loss of your precious daughter. Regarding Flecainide the symptoms you describe are side effects especially the strange chest discomfort you describe.

Ring your consultants secretary and tell them how you feel. Hopefully your consultant will review your meds.

Take care and ask away on here there is always someone able to help.

Dee.

[porridgequeen]

Hi Charlene

What a rough time you are having, our hearts go out to you.

Keep fighting and as the others have said, there are lots of people here who will help.

[keeponticking]

Hi Charlene. Very sorry for your loss and the situation you now find youself in. Am 36 and have been ill all my life most especially last 10 years after my pregnancy and then diagnosed with AF 15 mths ago. its not easy. You really need to get an EP! and keep after them - the door that creaks the loudest gets oiled first! please dont think you're alone - this forum has a wealth of knowledge and advice - just post your questions! take it easy (easier said than done with kids) so let the housework go to hell and sit down when you can.Best of luck. Emma.

[jeanjeannie50]

Hi Charlene - I was just wondering how you are feeling now.