Hello again. Thank you to everyone for your support up to now. It has been massively appreciated.
I’m 10 days in taking 2 x 50mg of Flecainide daily and had a horrible AF episode yesterday again. Really struggled to get it to slow down.
Have spoken with GP who doesn’t want to change things without cardiologist say so, but I can’t get to speak to/see the cardiologist at the moment with all that’s going on.
I’ve had more frequent episodes of AF than I’ve ever had before since starting this. Most of them fairly short, but 2 really horrible ones now. (140-150 HR too) Does that seem normal? Those of you with experience, do you think after 10 days I’m still getting used to it?
Am starting Apixaban today too now. I’ve never taken an anticoagulant before. I feel so worried about everything that’s going on with the C words, which I’m sure doesn’t help either.
I know there’s been a lot of discussion about whether us Afibbers are “at risk” or more vulnerable to complications if we catch Coronavirus. I also have to care for my mum if she’s got to isolate as she’s over 70. Trouble is, I’m not sure if I should be isolating too!
Don’t know what to think/do. Sorry - I think I just wanted to get this off my chest.
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Apple88
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I think Flec does take time to get in to your system Apple.
My personal experience is this. I started off on 50 mg twice a day - this seems quite common. When this level was in my system my cardio increased the dose to 100 mg twice day. 50 mg made no difference - 100 mg does though !
Maybe this is what your cardio will do for you. I think you'll need to be patient and then maybe there will be a bright light at the end of the tunnel.
As for the anticoagulant ? I'm not to keen myself and would like to get off it. However a stroke would be no fun. Risk and reward springs to mind - IMO the reward of reducing the chances of having a stroke far outways the risk.
Thank you so much for your response. I have definitely wondered about whether I need more than this current dose.
Hopefully things will settle down. Don’t think it helps that I haven’t been at work recently either. Being out of routine doesn’t help at all!
I was only diagnosed a year ago and sometimes feel a bit overwhelmed with how quickly things seem to have progressed. Am down for an ablation too in the next 3-4 months, but not sure what will happen with that.
Thanks for the reassurance. I’ll persevere until I can get to speak to/see the cardiologist. 😊
Hi Apple firstly Apixaban , I have been taking it for 3 years and was really scared at the prospect of taking it for the rest of my life.
Then I read up on stroke risk for those with a CHADS score and came to realise on balance I am safer taking Apixaban than not,I know that whatever I do I will not guarantee I wont have a stroke or a bleed and that would be the case if I didn't have AF at all.
I am gratefull that there are anticoagulants available to at least provide a degree of protection .
With regard to Flecainide, I was due to try it to see if it will help my ever increasing syptomatic episodes of P-AF but that prospect is now delayed indefinatly due to the virus but I think to give Flecainide a fair trial you really do need to try to conquer your anxiety which can contribute to the AF . I managed to do just that by learning relaxation and breathing techniques. Now P-AF is just an annoying inconvenience.
Oh and don't be sorry , there are many here to chat to you any time
You need to be anticoagulated for some time prior to and following the ablation although most of us elect to stay on them in any case as there is no eveidenc to suggest that ablation removes stroke risk.
Im pretty sure it is routine for cardiologists to check an EKG a week after starting Flec. Have they done one? Im in the US. I think the heart doc needs to see whats going on
Yes I had an ECG on Wednesday after 8 days of taking it. It’s been sent to my cardiologist as I had it at a different location from where he is based.
Haven’t heard anything back but I don’t think I was in AF when it was done. I do have multiple Kardia readings that show it from the last 10 days though.
I feel like I’d like it checked out as I’m very unsure, but it’s really hard to get anywhere at the moment as all resources (understandably) are being used for Coronavirus.
I think both UK and US health systems are soon to be like Italy's so if you catch covid19 now there may be no medical help available to you if you or your mum get in trouble in the next 2-3 weeks.
We just started the state wide shelter in place in California. The orders prohibit mixing households.
If you don't self isolate you could have it and be in a contagious non symptomatic phase and give it to your mum and then come down with it so you can't help her. The general guidelines recommend you self isolate for 14 days before going over to make sure you don't give it to her and she needs to self isolate as well.
As cases are rapidly increasing there is going to be a glut of people getting sick, overwhelming the medical system and people dying before we see the benefits of the SIP. Here there is limited testing, they aren't testing obviously sick people or people with mild symptoms unless they are high risk and aren't reporting them. Add that to the 80% who've mild to no symptoms and the official "confirmed case" count is drastically under reporting how many cases are really out there leading to a false sense of security.
I would take this very seriously because you can't go back and unexpose yourself or your mum.
Regarding the drugs, my advice from first hand experience is to follow Docs orders, also explain to the Doc any new conditions you experience for him to potentially adjust your Meds accordingly. The Docs do not always get it right first time but they know a lot more than anyone on the potential of the the drugs offered. Many require a concoction to provide the desired effect (and if you don't take the concoction it could make your condition worst).
I have seen videos by Docs on the internet that explain how C-19 can (not will) give palpitation even to those that have not suffered them before, palpitations can in turn set of other arrhythmia (such as AF). Its quite complex and I don't understand the detail so I can't offer any rational why other than it can affect our sympathetic nervous system. So we may be more prone to out existing condition. What I don't know is if this in turn will make the C-19 condition worst due to our lungs on working as effectively combined with our heart not working as effectively when suffering an AF attack.
Many of us have been concerned at starting anticoagulants and I cannot remember reading a post where this concern has been realised, quite the opposite I believe it is essential to take them (see first Paragraph). The only thing I noticed when I took them was that it took more effort to stop the bleeding from a shaver nick but nothing too onerous.
Hi, I had a similar reaction to fleicanide ! More episodes of a.fib and some very scary arrhythmias. My cardiologist upped the amount I took, until I was on maximum dose, and nothing improved. So I took a decision to stop taking it. I still have almost weekly episodes lasting several days but they do not have the scary “pausing” feeling that I got while taking fleicanide.
You have to be your own best advocate, and listen to your gut feeling. Best wishes ☘️
Totally agree with Paulbounce push to get through to your Cardiologist and ask if there is any reason why you shouldn't try Flecainide 100mgs x2 per day. In my case that stopped it.
My personal experience: Flecainide is a fabulous drug that really helps keep me stable. Your dose may be too low as I started on 100mgs twice daily but only the consultant can change your dose; the GP is not usually authorised. I have never had side effects. Same with Apixaban, no side effects and keeps you safer. I also take Bisoprolol low dose for rate control. I expect we are all a little more anxious at the moment so important to relax, in fresh air if possible, keeping a good distance from anyone else.
I started out on 50 mg. Twice daily, worked for 7 months, then went to 100 mg twice daily, I was in the hospital when started on the 50 mg twice daily. 12 lead ekg 2 hours after receiving the drug each time and monitored 3 days. I am not certain if the reason for that was due to complications on Tykosyn with a rare reaction of cardiac arrest? I currently have been on 150mg twice daily almost a year without any trips back to ER for cardioversion! I did take propafenone as a first drug 5 years ago, it worked for 20 months. As for now, Flecainde has worked quite impressively, we are all different though.
Apple88, I had 3 ablations, none of them worked. After the last one failed my afib got worse. I was close to passing out, difficulty getting my breath, and heart racing so bad I thought it was the end. My electrophysiologist put me in flecainide 50 twice daily, still wasn’t helping. He raised it to 100 every 12 hrs. and haven’t had even a small episode since. That was six years ago. See if they can give you 100 mg. Worked for me.
I started taking 50mg of Flecainide twice a day and my AF attackes increased. Was put up to 100mg twice a day which made no difference and then put on 150mg twice a day and ended up in hospital as my heart rate was high one minute and then dropping low. I went to hospital and while there my heart rate went dangerously low. Was told to go back to 100mg twice a day but felt awful and kept getting dizzy spells and felt I was going to pass out. I went to my GP and told him I didn't want to continue taking the Flecainide as it didn't suit me and he agreed and put me back on Sotalol. When I saw my cardiologist he agreed with this decision.
started on 50mg x 2 daily, no change in duration or severity of symptoms.
increased dosage to 100mg x 2 daily all symptoms disappeared. No side effects from the Flecainide. However this has only been 3 months so not declaring victory yet. Not that there is victory over afib, best i hope for is a stalemate.
good advice on not increasing without advice of EP, Flecainide can create some very serious arrhythmias on it's own.
good luck, hope you find the right combination for you ... george
I spoke with my GP this morning on the phone, who also thinks I may need an increased dosage but it has to be done on the say-so of my cardiologist. I contacted his secretary, but she said he was on leave for 2 weeks (not sure if virus related but seems likely).
So, no chance of anything happening for a while. I’ll have to just keep monitoring what happens and wait it out. Have been signed off work for another 5 weeks too. 🙁
It’s going to be hard to get help for anything else at the moment.
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firstly Apixaban , I have been taking it for 3 years and was really scared at the prospect of taking it for the rest of my life.
Aching heart after af post ablation 
Flecainide problem
PAF … ? Further echo
update on the ecg I posted 2 weeks ago! 
