A little advice please

[Goosebuckley]

Hi everyone, I need a little advice.I am a 59 year old woman, fit and normal BMI ETC . I have been diagnosed with A-fib for over two years. Currently waiting for an ablation( might be a while now) . I currently take 100 mgs Flecainide twice daily and 3.75 mgs If bi-soprolol. Although I hate the side effects, they have kept me in normal SR for over six months. However, Earlier this week had a 5 hr attack and one started this morning but stopped an hour after medication. I am not sure what is happening or if I should take action . I suspect I have become used to the drugs and that the dr will just “up” my meds. .. so more side effects. Is there anyone here who has experienced a similar situation? I would love to hear from you. Thank you for taking the time to read. PS. My A-fib seems to be hereditary

[Rubymurray25]

Hi Goosebuckley, Always disappointing when the AF returns when you just think it has settled but from my own personal experiences I think you are correct with the body getting used to the drug and in the short term your doctor might just suggest changing the dosage but the good news is that you have agreed to an ablation . I have had my medication changed four times to see which one I respond to best, but never by a doctor always by a consultant, either my regular one or in either A&E or the Assessment ward. I have had a AF ablation and a Flutter one and am down for a third, we are all so very different and for some one ablation can be enough. I was very nervous about agreeing to an ablation but it was for more straightforward than I imagined and simply accept the expert advice I am given. Wishing you well and the above is simply part of my journey and as I say we all know we are different. Good luck.

[Sfhmgusa]

Hi I don't want to be a misery, but generally afib tends to get more frequent as time goes by. It was certainly the case with me.

The good thing is that with meds and a bit of research about what you can do with diet & Lifestyle even though the thing might be more frequent the effect on you can get less and less as you get used to it and get the meds that work for you. There are lots and lots of things that can be done to improve quality of Life and so my advice is learn about and understand the condition. have conversations with your doctor(s) dont just blindly obey, and if possible see a cardiologist and have a list of thoughts and questions.. I suppose I am saying Knowledge is power in this

[Goosebuckley in reply to Sfhmgusa]

Thank you so much for replying. Sadly, my cardiologist is pretty lame. I might look into seeing if I can get another. As you say knowledge is power.

[Aus19]

Hey Goosebuckley, greetings from Australia. It's a shame that you aren't tolerating the drugs very well - but you should talk to your doctor. There might be some other drugs you could take (e.g. a different combination with the flecainide). Just an idea. Lots of us take these sorts of anti-arrhythmia drugs and don't have NSR for 6 months like you! That suggests your AF is not drug refractory, so a different drug regime may work better for you. Peace.

[Goosebuckley in reply to Aus19]

Thank you, I guess I will trot off to my Doctor and see what she can do for me. Many thanks

[Jajarunner]

If you can afford it, try seeing a private EP. My local hospital discharged me an almost cripple in march awaiting cardioversion. I could barely walk, let alone work. Haven't heard from them since!

Luckily I was sensible (and rich enough,) to immediately book a phone appointment with a top EP at Papworth. As I was already awaiting ablation he was able to arrange a CV within four weeks and the ablation four weeks later all on NHS!

Prices were £250 for consultation. If I'd had to go private, CV was about £1500. A private ablation was unaffordable at about £15,000!

The £250 was the best I ever spent as I cannot imagine what state I would be in now. And wonder if I will EVER hear from my local hospital who are unaware I have had all this done in the meantime!!!

[Goosebuckley in reply to Jajarunner]

Hi Jajarunner,

Thank you v much for your reply. I am in a waiting list at the moment but could be a long time right now. Great advice, I think a private consultation is the way forward!! I hadn’t thought if that!! Many many thanks

[paulalex1313]

Hello Goosebuckley. I have had AF for 28 years. In that time I have had three ablation procedures and I still take 100mg Flecainide twice a day. I have been asymptomatic for three or four years, so it seems that the ablations, combined with Flecainide, have done the trick for me.

I have never experienced side effects from Flecainide, but I have never combined this with b-soprolol.

I always carry Flecainide and Metoprolol with me, just in case, but have rarely used either. I did have a period a couple of years ago, when I had occasional ectopic episodes, but they have disappeared. The Metoprolol was only prescribed for an ‘as and when’ medication, after I have a very nasty attack of, what looked like, VT, but turned out to be AT.

I was told in no uncertain tones by my consultant, that 2 x 100mg Flecainide is the maximum daily dose, with just one extra as and when I have an AF attack.

Although it took three ablations to sort me out, this has helped me immeasurably. I am fortunate that I leave close to Harefield Hospital, a specialist heart hospital and part of the Royal Brompton. All by clinic appointments with my consultant cardiologists have been at Harefield and I could not have been looked after better.

[Goosebuckley in reply to paulalex1313]

Hi Paulalex,

Thank you for replying. Glad you are all sorted out!! It seems to be trial and error and very individualistic as to how AF is managed. It’s the bi-so pro lol that dies for me.. flecainide is fine. Looks like I need that ablation sooner rather than later!! Many thanks

[paulalex1313 in reply to Goosebuckley]

There are alternative medications to bisoprolol, so why not ask your consultant cardiologist to try another drug, which may not have the adverse side effects you experience with bisoprolol?

[MS444]

Before my ablation I was never able to use Flecainide at 100mg twice daily. It tried using 100mg pill in pocket for a while. Then I reduced the dose to 25mg twice a day which seemed to work well. I am 85kg so a small dose working for me says something about one size doesn’t fit all. I only took 25mg metoprolol when I had PAF. I was never taking it continuously. Once I took 50mg but it totally sapped my energy so I never did that again. My doctor prescribed PIP 10g Flecainide plus 25mg metoprolol to slow my heart during the PAF.

So I don’t know why some people are prescribed beta blockers and Flecainide in high doses continuously. I’m not recommending anything, but I found 100mg twice daily didn’t work but reducing the regular dose did. I don’t take anything now as my second ablation is working after a “touch up” three years after the first.

[Goosebuckley in reply to MS444]

Hi MS444, glad you stabilised now. I have no problem with the Flecainide 100 mgs twice daily.. a little tired but that’s it.

They gave me bi-so pro lol after being admitted to hospital and have just carried on with it. Horrible side effects. Feel like I have aged 10 years. Looks like I might have to fight for an ablation sooner rather than later. Many thanks for replying

[MS444]

Typo. 100mg PIP Flecainide

[Madscientist16]

Yes. After my AF diagnosis I was on one med. When it didn't seem to keep AF at bay, the doctor increased the dose and I had to deal with the side effects again. When it didn't hold, they added another med. That's when I asked for an EP consultation for an ablation. I had to try something else. The meds just were not working and making my life miserable. Sixteen months after my diagnosis I had the ablation. I am now AF and medicine free for 9 months.

[Hidden in reply to Madscientist16]

What is involved in an ablation & is it painful.?

[Madscientist16 in reply to Hidden]

I am sure you can find a bunch of information on this community and online, but essentially a catheter is inserted through the vein in the thigh to the pulmonary veins at the back of the heart. Either cold or heat is used to create scar tissue in the areas of the pulmonary veins and atria where the rogue electric signals originate that cause AF. I did not feel anything as I was under anesthesia. I returned home from the hospital the next day. I had some discomfort and headaches with aura, but it was not too bad at all. I would have the procedure again. You can check out my ablation recovery by clicking on my screen name. I reported on my recovery over several weeks and months.

[Goosebuckley in reply to Madscientist16]

Hi Madscientist16

That’s exactly what I want to hear!!!

I will get in touch with my medics and jolt them

Many thanks