Hello I hope someone can help me. I was diagnosed with AF and AFlutter 7 years ago . It was managed with 2.5 neveb. I didn’t have any episodes until jan this year when I had 3 episodes in the next few months.beta blocker has been increased twice and after a night in hospital I was started on flecainide 50 mgs twice daily . It’s not working ! Since June 24 th I’ve had 11 episodes 3 in the past 24 hrs. This is despite my GP increasing my flec to 200 mgs daily . Getting no sleep it’s started again after 3 hours. I’m at my wits end .contacted cardio secretary she arranged ecg which was normal when I had it & I am waiting for cardio logist to tell me what to do. I can’t go on like this it’s taking my confidence . Does any one relate to what I’m experiencing? I’m going to ask for a private appointment to see Derick Todd in Liverpool asp . I live in Bolton Lancs. Thankyou Mary .
Unbearable AF episodes become every ... - Atrial Fibrillati...
Unbearable AF episodes become every other day on flecainide last 3 weeks plus 7.5 beta blocker
Hi Mary - so sorry you are suffering. Many, many of us will be able to relate to your post as AF/AFl can be so debilitating - as can the drugs they give you.
You seem to have had AF/AFl for a long time so I wondered if you had ever seen an EP rather than cardiologist? If options other than drugs have ever been suggested?
What exactly do you find unbearable about AF? Feeling your heart bounce around? High or low HR? Breathlessness and fatigue? Fear?
I used to find AF completely disabling as I had PoTS and low BP anyway so with AF I would faint so just had to lie completely flat until it reverted - but I self monitored to avoid going into hospital. I always found AFl much more disabling and uncomfortable - HR was ways so much faster. During that time all I could do is listen to Audiobooks - learned such a lot! I found distracting myself really helped me cope with the disabling symptoms.
Trying to manage several conditions certainly is challenging to say the least as I know only too well!
After 2 ablations, which helped the AF/AFl and gave me 3+ years free of arrythmias, AF returned and as all heart meds were contraindicated for another condition I was offered a Pacemaker - that worked! All drugs have affects and they made things a whole lot worse for me so ask for some collaboration with your Diabetes team, my neurologist and EP consulted before changing any meds.
My suggestion would be is keep returning to your GP and make nuisance of yourself in the nicest possible way. Ask to be referred to an EP specialist centre of excellence. Buy yourself a Kardia and record these episodes so you have evidence of frequency and ECG.
Have you read all the information on the AFA website regarding treatments? Have you thought about signing up to some of the online training and support groups which again on the website? Meeting and talking to others really helped me in so many ways. When you are fully informed you are much more able to be proactive in your treatment plan and ask appropriate questions. Before I found the AFA I didn’t know which questions to ask of whom or how the system works. You need to know that in order to negotiate it and that takes a lot of energy so if you have someone who can help support you do this - get them on the case!
I learned to not just accept what the doctors said but asked challenging, searching questions about the risks and benefits of various treatment. I learned that adjusting my Lifestyle - sleep, breathing, exercise, stress and what I eat mattered and it was no good having the treatments if I didn’t do all in my capacity to help keep my heart in rhythm by doing all I could to ensure it stayed that way!
So you are not alone in how you feel, AND life can improve. Maybe read the post just prior to yours - what would be your IKEA test?
Best wishes CD.
I can't add anything to the response by CDreamer , excellent advice , except to reiterate that seeing an EP would be the best option,to explore other options. I have a Kardia,simple to use and gives great , accepted, evidence for medics .I was just like you this time last year ,had a lengthy run of nasty episodes,but it did settle eventually
Hope yours does too. Xx
Wishing you the best.
Derek Todd is one of the top EP cardiologists an likely the best in your area so why not try to see him.
AF unfortunately is a progressive condition so your experience is not unknown but some improvement in quality of life should be available.
Dr Todd did both my ablations and is one the best. I initially saw him privately at The Spire hospital in Warrington and was the best £200 I’ve spent. He then transferred me to his NHS list at Liverpool Heart and Chest hospital. Like you my Afib had been well controlled for c12 years but then it started to make me quite poorly for a year or so until I said enough was enough. I was prepared to travel (I’m in West Yorkshire) did some research and Dr Todd was among the best. I actually have a checkup with him in 2 weeks time. I hope you get to see him and he is able to help you. Take care. xxx
Thank you Frances I’ve got an appointment 5 th August ,it can’t come quick enough .
Hi Mary. Sorry you’re going through the mill. If it’s any consolation, I found the Flecainide took about three weeks to have any effect. Much better now, but it did take a while…..
So sorry you're having such problems. It may be that some of it is because you're worrying about it all the time. See Dr Todd and hopefully you'll be able to sort something out. Take car and best wishes.
It sounds as if you could do with a different drug. Some work wonderfully for some, and some don't -- but then an alternative drug will. Wishing you luck in finding the right combination. I've been through it all!
Thankyou snow girl 65 it’s horrible and I must say how thankful for this site as you all know and understand how hellish it can be .
Best wishes for Aug 5th. For what its worth, I think you have taken just the right step to see the best in your area privately and not stick with a cardio team that don't induce confidence.
Hi George 22, yes I can! I was diagnosed with afib and flutter last July and was put on flecainide 50mg twice daily, told to take extra one in the middle of the day if I had 'very fast episode. I was very symptomatic with heart rate over 170bpm at rest.Flecainide gave me pro-arrythmia with awful episodes happening every week, I would get the familiar thud, flutter and then off it would go! I booked to go and see a top EP privately, whi told me flec wouldn't have been his first choice of drug for me, so took me off it and put me on 40mg of Sotalol twice daily, things settled quite quickly and only had the odd flutter up until now, fingers crossed.
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