I've had AF for 18 years and have certainly suffered over that time.
After 3 ablations and still having arrhythmia which included the following info copied from ECG July 2022 :
Atrial flutter with variable AV block with premature ventricular or aberrantly conducted complexes
Left axis deviation
Low voltage QRS
Abnormal ECG
After seeing that ECG I was taken off of Flecainide as my cardiologist said this was the cause of those results. He was an elderly man who had probably been called in from retirement to help with the workload after Covid delays.
My latest ECG of April 2023 says:
Undetermined rhythm
Otherwise normal ECG
I sometimes just wonder how much all these medications we take are really helping, who would have thought Flecainide was the cause of all those things. How many people have unnecessary procedures because their medication is making heart rhythms worse?
I feel so much better without Flecainide, have more energy and now just take 1.25mg at night of the beta blocker Bisoprolol.
Jean
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Your experience reminds me of a conversation I had with my cardiologist regarding Flecainde when he said that it is a marvellous drug for many people but for others it either doesn't halt the arrhythmias or causes side effects. He said I was one of the ones where it works well - 9 years and no AF.
It shows the need for constant monitoring and analysis of an individual's reaction to any drug.
It's good that your life has improved without it - stay well.
Edit: He gets an ECG done every 6 months - as 'you are taking advanced anti-arrhythmic drugs' his words.
An ECG every 6 months, you're lucky! I hadn't seen anyone with relation to my heart for about 3 years. I thought that taking Flecainide was the reason I kept reasonably well. It wasn't until I stopped taking it that I realised how much more energy I have now. The main thing being I could now mow the back lawn in one session instead of about 4 with long breaks between.
I know how fortunate I am to have my cardiologist - a really dedicated man and although I have had telephone consultations with him since COVID struck, he arranges an ECG at my local hospital and sends me a letter with his thoughts afterwards.
Wonderful to get the energy back - I felt like you when I changed from Bisop to Nebivolol.
I had to smile, I usually have to talk my GP out of doing an ECG. I see her every six months and the Cardio annually. When I visit her for a check up and renewal of my prescription (Has to be renewed every six months unless there are changes in between) we go through the form for the path Lab. I can't escape that at least annually, but I don't like being starved ! I manage to wriggle out of the ECG, with either I saw DR D (the Cardio)two months ago or I'm seeing him in two months and he did/does fancy tests.(I really don't like stripping in the surgery treatment room). She thumbs through my file until she's relocated his letter, then believes me! I saw her this month and will see my dear sweet man of a Cardio in September, so she's satisfied for now !
I just don't like stripping and getting cold unnecessarily I suppose, when I know I'm having the fill Monty or have just have it a couple of months ago - no point in paying for it twice (I'm stingy) !!!!!!😀
I asked my cardiologist about going onto Nebivolol and he laughed and said that's not for you. I'm annoyed with myself now for not asking why that was.
Not very helpful for you Jean. I think when we are roadblocked like that it's difficult to by-pass the initial surprise and by the time we get it together again, the conversation has moved on.
Asked my cardioguy the same. His answer was Nebivolol isn't really used in the states. Of course dumb me didn't ask why not. I think a lot of the medical practices here get into the "index card" mentality-they have a meeting of all the doctors, decide XYZ is the preferred drug for whatever, and that's it. Every patient coming to the practice with "whatever" gets XYZ, regardless, because "that's the way we do things".
I can tell you why Nebivolol isn’t used in the states. I am on it and am in California. It is way more expensive than say metropolol or bisoprolol. Medicare for one doesn’t want to pay for it. It costs me $40 or better a month with insurance. Metropolol is $0. Metropolol doesn’t set well with me so I was advised Nebivolol.
I am on Nebivolol and have not had episodes of AF since I started(6mos) but I may have AF for a different reason than you do. I have a prolapsed valve with accompanied slightly higher BP as I aged. I have had issues all my life as far as I can remember with Palpitations, missed heart beats and then into AF I am now 74. I saw a cardiologist agains last year and he didn't put me on anything, but my GP started me on 5ml of Nebivolol. I asked her why that drug, and she said it has the least side effects. There is the reason to ask your dr the same question. It may not work for you I don't know. However, 5mg put me in a funk physically. I asked my GP if we could try a lower dose and she agreed, so I am on 2.5 now and still no AF. I am in the US. Personally I don't think doctors do their research and they jump on the band wagon and just write prescriptions. My dr know I don't want a bunch of useless medications or vaccinations and she is good with it. Just saying, because we all have to make decisions based on ourselves.
Some of the best doctors don't allow the drug reps in their offices. I follow several different drs online and have been to their lectures, however, we still have to make choices for ourselves. I don't know if any of you follow Dr. William Davis he is what I refer to as the Wheat Belly dr. He has a podcast, do a search for him his last two episodes were really interesting. BTW, he is a heart surgeon himself. My last check up I asked my GP if she could do a homeostasis test while they were running by lipid panel. She said no, that is functional medicine. I thought to myself well what is what you practice? Disfunctional? She settled for an inflammation test, which mine was very low. That tells a person that their diet and their medications aren't causing other problems. I am not the expert on blood tests so just keep that on your radar.
I've had two major inflammation results over the last few years that were really high. Each time I was so ill I lost a stone in weight. They were both due to infections, the second one being for Pneumonia and COVID together.Here in the UK pill companies reward GP's for prescribing their pills.
I have not seen a cardiologist for years and years. Mind you I don’t know what he could do and as I can sort of live with my silly heart now and just pace myself and not over strain it and hate taking pills, except Apixaban and supplements I don’t see much point in seeing him. I monitor myself with my Kardia and bp monitor but don’t send the results to anyone
I thought I was ok with Flecainide and I thank god that I asked to see a cardiologist. Without doing that I would be missing the extra energy I have now. Don't you worry that your heart may be coming enlarged with each AF attack?
I certainly don't blame you for just taking Appixaban. Over the 18 years I've had AF I've stopped and taken all sorts of pills. I always thought I knew what was best for me, but have been proved wrong lately.
Yes of course I do but I had such problems with my one and only ablation that there is no way I want to repeat that unless totally necessary. That ablation worked eventually, but it took months and months to settle down, in so far as it made everything liveable with - with restrictions. I have learned to live with those. Kardia readings shuttle between A/F, Supra Ventricular, and Unclassified, very occasionally normal, and I do have ectopics but those are not too bothering. Breathless on exertion but then in the words of Maurice Chevalier ‘I am not young anymore’ - although unlike him I wish I were.
Hi Jean did you just stop taking the flecanide or wean off of it. I’m asking has I have just started taking it because have had lots of afib episodes lately. I had it prescribed as pip but was always frightened of using it. I’ve been away for a week and had to take it to calm my heart but want to stop it now if I can.
Hi Jean No I haven’t been told about ecg or anything to check up on it. When I was first prescribed it I was due to go to Vietnam and told my EP how frightened I was about going away and he said just take the flec and it will work within a few hours. As it was I didn’t go due to covid. They seem to give them out like smarties and not think anything if it. I’m due to go to Japan in a January for the mini maze and I don’t want the flec causing more problems. I’m having an echo August 16th so that will hopefully go all well. Hope by taking it for such a short time it may have not caused any problems.
I stopped taking Flecanide cold. I was on 50mg 2x daily. I began having PVC's (many) and they pretty much stopped after I went off the Flecanide. I was on it for 7yrs. Now I take 1/2 a beta blocker and have had no Afib.
Thanks Betsea for your reply, I did wonder about just stopping it. I’ve gone down to 50 twice a day. I was on 100 twice a day for the week while I was away. Might just stop from today and see how it goes. Glad to hear your afib has settled.
I have had similar thoughts but for different reasons. In my case, I believe my problems were virtually self inflicted due to fear, lack of knowledge and understanding.
Back in early 2014 there were times when I felt moderately breathless so I made an appointment to see my GP once we returned from holiday. I remember we had a load of Sahara sand deposited everywhere and I wondered if this had triggered asthma which was a big problem for me as a youngster. I nearly cancelled the appointment because my situation had improved and I wasn’t aware of any obvious symptoms. However, my wife persuaded me to keep the appointment and my GP checked my pulse which he said was rapid and irregular. I was immediately sent off to the local hospital for an ECG which confirmed AF with an irregular pulse rate of 123. The same day back at the Surgery, I was prescribed a low dose of Bisoprolol which was later increased to 3.75 mg and I started Warfarin. I reacted very badly to the diagnosis and the symptoms began to increase significantly as did the medication. Eventually, Diltiazem, followed by Digoxin was added to the mix. To this day, I do not know whether it was my reaction to being told I had a heart condition or the significant increase in medication which made me feel so unwell.
Fortunately, in September that year, I had CV which was successful and apart from Diltiazem and AC’s, all other medication was stopped. Eventually, the CV started to falter but a low maintenance dose of Flecainide kept AF largely controlled until I had a Cryoablation followed by an RF Ablation and (touching a bl**ding great big tree) I have been in NSR since although I did take Flecainide as a PiP a few times after the second ablation.
I was lucky, my surgery reacted very quickly to my condition but it perhaps was less effective in dealing with the physiological effects of diagnosis but I do often overreact as many here will agree. This is one of the reasons why this forum is so important in trying to help patients come to terms with this condition which is often so variable and difficult to control……
Probably not initially, back in 2014/5 when first diagnosed both my Cardiologist and EP felt that my thyroid wasn’t sufficiently off track to cause AF but almost a year after the second ablation, blood tests showed that my thyroid function had worsened. Frankly I am amazed that AF has kept at bay during recent stressful events! 🤞
Thank you Jean for posting this. Food for thought. I was recently prescribed Bisoprolol by the cardio nurse following a short lived CV procedure for persistent Afib. I then remembered why Bisoprolol is probably unsuitable as my blood pressure is already generally on the low side so I’ve now been offered digoxin and though I love foxgloves in the wild I’m quite alarmed by potential side effects from taking them internally! An echocardiogram showed my heart in good shape, and resting heart rate is generally in 70s, pushing up quickly to 90s and beyond with not much exertion. Of course I’d love it if my heart didn’t have to work so hard, but like you say these things need to be carefully thought through. I’m glad to be off the amiodorone that I was on for a few weeks prior to the second CV. 😅
I took Dijoxsin for a bout 5 months for A fib it did nothing for me only 125 micrograms per day so it aint much i am currently on Ace inhibitors which are made from Brazilian viper venom..
Yes, you must certainly keep an eye on your BP when taking Bisoprolol. I actually like that drug, used to be taking Flecainide and Metoprolol, until last August.
Many years ago Digoxin made me feel like I was losing my mind. I'd never voluntarily take that again - it put me in a daze and made me feel low which is certainly not me. It will be interesting to hear how you get on with it.
It sounds like your heart rate now is similar to mine which is 60-90bpm.
Just used my arm BP machine and heart rate 77bpm and BP 121/80, just taken again and now it's 137/77 and 82bpm. Have just drank a mug of tea though, but both taken after the tea.
It's always such a job to know what to do for the best isn't it?
My BP is fairly low on Bisoprolol, but I seem to be ok with it. The home monitors don’t work that well in AF, but I’m often around 85/65 region. Though it’s higher when I go to the clinic, though still fine.
The cardiologist wanted me to increase my Bisoprolol, and I was so worried, but he felt that the symptoms I had were due to the ventricular rate and not the beta-blocker, I suspect he was right, as I’m on an even keel with 5mg Bisoprolol and an anticoagulant. At least for now!
Flecainide didn’t suit me at all, and worked about as well as a chocolate teapot. Not sure it did my heart any good at all. Now I just feel that I’m lucky, even though in permanent AFib. Rate controlled and anticoagulated. Get a bit tired, and sometimes get heavy legs walking uphill. Not much to complain about!
That systolic rate of yours at 85 would make me feel dreadful. If I were you I'd drink more water to try and bring that up. I always have a glass of warm water as soon as I get up, then shortly after a glass of orange juice. Then I have my breakfast and take my vitamin pills with yet another glass of water. I feel it sets me up for the day.
I feel ok with it really, lots of drinks. I do stand up very slowly from lying or even if I’ve been sitting for long. My blood pressure has always been on the low side, so of course the Bisoprolol doesn’t help with that. I did try to mention the low BP to my GP, in the weeks following my ablation. His reply was not to check…
…i have always been wary of meds, docs have thrown a lot at me over the past 3 years with arrhythmias , however I didn’t always take them.. I knew Diltiazem helped and I was doing quite well on it with few side effects …so I took it….specialists still wanted me to add Flecianide… my blood pressure was quite low so I didn’t want to take the Flec so I didn’t…my GP later agreed with me since my BP and HR have dropped too low in the past… and BP stays low in general.
First cardiologist wanted me to take bisporpolol but after trying and suffering dreadfully on it.. I refused to take it longer.
sometimes we do need to be the master of our own destiny.. although we must try what our doctors suggest most of the time….in my opinion…
I agree with you Chrissy, we are the ones that know our bodies best. I'm bit of a law unto myself, but I'd never promote that to other members here. We are each responsible for how we are feeling AF wise and if some medication doesn't agree with us we have to make it known.
Diltiazem sounds as though it's quite a popular drug lately. Though I've never taken it myself.
All drugs need monitoring and this is especially true with black boxed anti-arrhythmics like Flecainide. The US protocol is usually a stress exercise test and echo to qualify. Any worrisome structural heart issues, a no go. Then an ekg is taken a week after Flecainide is started. Any worrisome abnormalities, the Flecainide is discontinued or the dose reduced. Then another ekg a week after any dose increase or with symptoms. In my case, I became symptomatic after a dose increase and the ekg confirmed my QRS inteval was widened too much. My dose was reduced.
Flecainide can be a real lifesaver for many of us, but it has to be monitored periodically.
The principle of monitoring, dose tweaking and sometimes trials off a drug to see if it's helping is called medication optimization. It applies to all the medications we taken and it's something that often gets overlooked by our busy doctors.
One example are beta blockers that are often routinely prescribed after a single afib episode and frequently continued on a daily basis whether or not the person continues to have episodes. Fatigue is a common side effect.
Beta blockers like bisoprolol and metoprolol are essentially rate control drugs. They are very weak anti-arrythmics. Are they helpful during an afib episode to bring down our rate? Certainly. Are they helpful on a daily basis to keep us out of afib? Questionable. I had afib for over 40 years and never took rate drugs except during an episode.
So again, if you think a medication is making you tired, or you are having other side effects, bring it up with your doctor in the context of "Do I really need this drug?" "Could I try a month off the drug and see if it's really doing anything other than making me feel bad?"
Doctors are busy treating our conditions. Sometimes they forget they also have to treat the side effects of their treatments. Often, it's up to us to remind them.
The strict regime regarding administering Flecainide in the States is interesting. In the UK, the first dose is supposed to be administered in hospital under close supervision before a patient can continue taking it as a maintenance dose on a regular basis. The same applies if Flecainide is prescribed as a PiP. In my case, my Cardiologist, who knew me and my medical history quite well including ECG and an Echocardiogram soon after diagnosis etc., seemed comfortable with me taking it around two years later without any external supervision.
As we both know, the US and the UK have very different ways of funding medical treatment for the majority of their respective populations. It would therefore be interesting to know, assuming almost all treatment is financed through insurance, if you think the degree of caution you describe is seen as a means of generating additional income rather than as an absolute medical necessity. There is no question that Flecainide and/or Amiodarone as well as other similar drugs are potentially dangerous so it begs the question as to how US citizens who cannot afford the insurance cover needed are managed when or if these drugs are deemed necessary……
Don't see the association. Initial in hospital administration here is sometimes substituted or in addition to exercise stress test. Of interest is that some ep's don't really either. It has to do with an old study showing rare dangerous arrythmia's from Flecainide, namely 1:1 flutter which requires emergency treatment. Different ep's here interpret that study different ways, but the consensus seems to be to administer Flecainide only if heart is structurally sound and then follow up ekg's whenever the dosage is increase. Same here with nodal blocking agents taken with Flecainide like beta blockers or Diltiazem. Most ep's prescribe them, but some don't think they are necessary. One difference between here and there may be that the US doctors have more discretion on how they treat. In theory this is good, but it comes down to the doctor.
Thanks for your comments, you seem to have much more detailed understanding of how things medical function within your country than many of us do in ours. Most of the regular contributors offer information in their Bio about their AF journey and how they have acquired their knowledge base which members often find helpful…..
I've never heard of Flecainide being called a black boxed anti-arrhythmic. Don't think we label it as such here, but I do know that my EP wasn't happy for me to be on a high dose for long. He much preferred Sotalol, which did nothing to halt my Arrhythmia.
Yes, having had AF for 18 years I'm aware that there are rate and rhythm drugs. I had no idea that Flecainide was causing my problems. I thought I was as well as could be expected with having constant AF. Really how are we to know, other than by heart rhythm experts telling us by looking at our ECG's.
I'm certainly not backwards in telling any GP what I think. One male one said he'd never had another patient like me - I have opinions and am quite happy to voice them!
I remember the first time I had AF and went to hospital. I was told they would prescribe Metoprolol for me to take daily. I was bewildered and asked why I needed that drug, saying I may never have another episode - I truly believed I may not. They then agreed I could take it as a PIP.
I hope you are now feeling better after your ablation.
Thanks for the well wishes, Jean! And good for you challenging your doctor on taking daily Metoprolol after only one afib episode! Unfortunately, most people just take what the doctors give them without question. We really have to be involved in these types of life altering decisions.
Jim
"Boxed warnings (formerly known as Black Box Warnings) are the highest safety-related warning that medications can have assigned by the (United States) Food and Drug Administration. These warnings are intended to bring the consumer’s attention to the major risks of the drug. Medications can have a boxed warning added, taken away, or updated throughout their tenure on the market. Over 400 different medications currently have boxed warnings"
Good for you Jean..completely agree with you. I think all patients should be expressing their views and doctors should be trained to listen and value feedback
Many years back I learnt the hardway the disaster that can happen when you just follow blindly what a doctor says or prescribes. It's even more important now as GPs definately do not know your case and it's history. I'm a firm believer of learning about my condition and expressing a wish to dicuss and insisting on this. Some doctors appreciate this, most don't but it's my body, my life and I am the one who has to live with the consequences of decisions made. Because of my attitude a few disasters have been averted.... Such as a GP who recently thought Ramiprimil, Verapamil and Riveroxipan were all the same and thought they were all blood pressure tables so thought it would be good idea to stop two of them. Thankfully I knew better! And another who didn't discuss my blood test results so texted me an absurb adjustment to my thyroid medication that would've made me exceedingly ill when the blood test was clearly wrong but didn't query it. No consultation at all. Obviously I insisted on a consultation whereby I spoke politely but directly.
I therefore dread the day when I'm post op and may not for a while be as on the ball to monitor what they get up to!! 🙄
Me too!! Love your style Jeanjeannie! 👍👍Yes am more north but in fairness have a great local hospital but my GP Surgery is pretty useless. I do draw the line at texting me changes to my medication!! 😤
I had open heart surgery for aortic valve replacement and bypass and the cardiologist refused to see me for 6 months. I was way over medicated on everything particularly beta blockers, they switched from metoprolol to bisoprolol and refused to listen to me. I was literally passing out. They finally took me off them after 11 months and I went into withdrawal. They refused to see me or believe me. I'm now bedridden 2 years and nobody wants to help. I have frozen shoulder from being bedridden and I have a million Dr. appointments and tests and on all kinds of crazy meds that make me sick. I'm in Canada and wish that I never had the surgery as my life ended that day. Living in this pain is cruel and unusual punishment all because they refused to listen to what I knew about my own body.
I'm so sorry to hear how you are suffering Beater, your situation sounds absolutely dreadful. Do you have someone looking after you? Also do you have any relatives that would battle for better care for you?
Thank you so much. Yes my spouse advocates for me quite brutally but unfortunately we are both women and between the misogyny and homophobia we are not taken seriously.
Bless you, so sorry you and your spouse are not taken seriously. I go to a female GP who certainly listens and takes what I say more seriously than the male GP's do. So I understand the misogyny. I bumped into her in a supermarket and she asked how I was and I thought' hold your tongue Jean' it was not the time or place to mention my ailments.
Thanks for your comments I am in the process of being taken off digoxin slowly in 10 days time will come of it hopefully for good just take 2.5 Bisoprolol now
So true, but sometimes difficult to tell what’s what. Recent example, I have been having episodes of persistent AF (7 days +) probably as a result of stress, overwork and heat. Then I began to feel permanently slightly drunk - a bit dizzy and faint. The crunch came when I took a warm shower and nearly passed out, frantically thumping heart etc. Then I remembered The Blessed Bob’s ‘unnecessary’ post re BP, drank a lot of water and thought hard. I stopped my BP tablets and found my BP monitor (a challenge because things have gone AWOL since I moved). Next day I found my BP was low 120s over low 70s, today 112/65 - clearly something strange is going on but also clearly BP meds are the last thing I need. Poor GP will see me again soon 🤔
I know exactly how you feel Buffafly, my BP does strange things too and was low a few days ago about 98/60. Certainly make sure you see your GP if you don't feel right. I'm wondering how you thought 120's over 70's was low, even 112/65, both those sound normal to me, but what do I know!
I usually never forget to drink plenty of fluids and start my day with a glass of water, then a glass of orange juice. This will be followed by my breakfast where I take Warfarin and all my vitamin pills with yet another glass of water. About an hour or two later I drink a glass of coconut water. From then on I'm afraid it's a mug of tea lunch time and then all downhill with regards to keeping hydrated. I just somehow forget! May remember mid afternoon and dinner time and late evening. Yesterday, I missed the bus home from town and walked about a mile in hot weather up a steep hill and steps. Once home I felt quite ill. I think my body thermostat may be broken. My goodness I was so hot and only had a short sleeved dress on.
I also find that when walking downhill to the town I feel really hot, even in winter, others people are walking around in cosy coats and there I'll be with mine off.
I hope your AF events improve, the way you say you felt sounds awful.
Hi Jean, I know that doesn’t count as low BP but it’s much lower than my usual BP and today it was down to 108/50 which is worrying because apparently low diastolic pressure is very bad for your heart. My GP said she would be happy with my BP at higher than 135/85, apparently because older people actually need a higher pressure to prevent dizziness and falls. A few days ago I was standing in the kitchen and I found myself gently falling sideways, luckily ‘came to’ and righted myself! I’m going to concentrate on the fluid intake tomorrow. I also feel the heat and get very sweaty with a little effort 🥵
Oh I didn’t know low diastolic BP was bad for your heart. For some time now mine has been something in the region of 136/46 and pulse 43. I know the pulse is low
I am due for a left sided ablation in September so I hope that will put things right?!?!?
That is why I took myself off bp meds except when on the odd occasion when I am really worried it shoots up and then I take it for a few days and ween myself off it by taking one every other day and then stop.
I absolutely 100per cent agree with you Jean. Medication makes me so sick and my AF has been much less since l stopped Bisoprolol regularly and just have it as a pip. I believe the human body has certain capacities to heal itself. I am not poo hooing medications as the they can be a life saver and necessary. I think it is an individual thing and you have to listen to your body and how drugs make you feel. All drugs have side effects and this can cause worse problems. My heart felt like it was in a vice when l took Bisoprolol and like it was being restricted. That’s me. You have had problems a long time Jean so you are well experienced and know your stuff. Thanks for all your help and advice and keep well.
Yes, I'm certainly with you on your view of being cautious when taking AF drugs.
Coming off of Flecainide has been a real awakener for me. Mind you I'll always take anticoagulants, too risky without! I also take 1.25mg of Bisoprolol daily now. Took the dosage down at first with my GP's consent and then from 2.5 to 1.25mg myself. Will make sure that dose is fine before I tell my GP what I've done.
Thank you. I always feel tired and have put on weight since all the pills and reading a few posts on flecainide I have been not exactly worrying about it, but interestingly concerned if you know what I mean!
I’m due to have radio frequency left sided atrium critical atrial fibrillation/tachycardia in September, (something like those words) but as only a bit if lighthead feelings snd the very few palpitations I’m a bit worried as my diastolic reading is never higher these days than 46 snd heartrate between 43-45
Now not sure whether to carry on and go to Harefield or start again
Decisions decisions! Wouldn’t it be nice to feel well snd energetic
How lovely it would be to be normal, but I think the only chance of that is to pay out and go to Japan or Houston for the Wolf mini maze. Though I think there's a Mr Hunter who does a similar type thing in this country.
I’ve just sent GP surgery the BP and heart rate results (not easy to get a face to face these days is it). So hopefully he will get back before I speak to pre op assessment which isn’t until September
Thank you for telling me as I didn’t think it was anything to worry about
Wow, that’s amazing but not surprising to me. I’ve long believed that there’s going to be some kind of side effects from putting any drug into your body.
I’ve chatted you in the past about my SVT and ablation done about 6 years ago. I’m told that I now need another as I apparently have A-Fib or A-Flutter…doctors can’t seem to make up there minds.
I’ve been taking Metoprolol 25mg (doctors wanted me to take 50mg twice a day) and blood thinner (Eliquis) 5mg, both twice a day.
I feel that I could probably take even less but doctors have me fearful.
Unfortunately, fear is what keeps most of us going back these doctors and taking these prescribed drugs.
My husband was diagnosed with Parkinson’s in 2020 and we’ve been living in fear since then. We’re now starting to believe that the doctors are as baffled as we are about what to do with it.
Yes, doctors are sometimes not too certain about what to prescribe for AF aren't they? That's why its good for us to give our opinions too.
Fear is horrible isn't it and at times we can only trust our doctors advice. I have a lovely lady GP now and she really listens to what I say and asks what I think. So refreshing.
I'm sorry to hear that your husband was diagnosed with Parkinsons a few years ago. Is he managing to keep it under control? Getting older is no fun is it!
Yes, we are both in quite a pickle. The longer I wait to see a cardiologist, the more I question if ablation is the answer. I’m even beginning to wonder if the diagnosis is correct.
Was thinking of seeing a functional doctor (Naturopathic) as I’ve read about how some supplements have alleviated A-Fib symptoms while others made them worse. Recently, I read that magnesium isn’t good for those with heart problems (I take it to help me sleep). Perhaps a functional doctor could flag these types of things and guide me better.
And, also wondering if such a doctor might prove interesting for an alternative approach (or at the very least 2nd opinion) for my husband. He is doing ok (thanks for asking) but is starting to struggle with various PD symptoms. As you know, it is progressive, debilitating disease. He hasn’t started C/L meds yet but has been taking Dopa Mucuna (a supplement with natural C/L properties in it) and is trying B1 therapy. It’s been quite the journey so far..still trying to wrap our heads around it all.
Thanks for your interest and letting me vent! Wishing you a very good day! 😀👍
I researched a lot and found that Flecanide could cause! AF!
so after 6 months or so I just stopped taking it. It stopped to my surprise Arrhythmia immediately. I was o so happy. It did not come back till this year, but my Apple watch sometimes tells me Atrial Fib, or Sinus Rhythme or indecision. Heart beat between 50-70
Cardiologist says no AF but sometimes an extra beat that bothers me not. But he put me anyhow on eliquis. He also gave me Amidiarone but I do not take that. It scares me like Flecanaide.
I think we all need to do what we consider is best for us. We are the ones who know our bodies best and get an intuitive feel for what is right or wrong. However, I do always try the medication I've been prescribed before considering rejecting it. Amiodarone damaged my thyroid and I now have to take medication to right that for life. Hate that drug!
Your heart rate at what you state sounds fine. Make sure you take your Eliquis, anticoagulants are the one drug I will always willing take.
I so so believe what you are saying after a merry-go-round of what doctors think you need and especially here in Spain where dosages are far too high for elderly people in my case I've put my foot down and stopped all my gp recommended and just take what the cardiologist recommended apixaban all the breathlessness and arrhythmias have ceased and I'm back to being me
That's exact proof of what I'm saying and I'm so pleased to hear that you have your life back again - same here. Not that stopping heart regulating meds would be right for everyone, but for you and me it certainly was. My cardiologist looked at my ECG and told me to come off of Flec as that was causing more problems than helping.
I was taken off flecainide when my af changed from paroxsysmal to persistent. The electrophysisist said the flec wouldn’t do me any good now! I take one 5mg bisopropol and Apixaban now. I suppose we are at the mercy of our consultants. I’m so pleased you are so much better.
Sounds like you had a good EP. I hadn't seen anyone re my meds for over 3 years and that was the same time I went into Persistent AF. We certainly are at the mercy of our consultants.
This is uncanny Jeanjeannie because I am experiencing just the same as you.
I have taken Sotalol and Flecainide over the last 6 years of having AF. I have only been able to take low dosages because of side effects. I was never a good candidate for ablation. My AF has been nudging towards persistent and I am very symptomatic…breathless, brain fog, fatigue, etc etc.
Recently I saw an EP privately who took me off Flecainide and I feel so much better and counter intuitively I have had fewer episodes of AF. My quality of life has improved enormously. I am still on 1.25mg of Bisopralol which continues to “hold me back” but I can live with that.
Since I already have a pacemaker I may well go for AV node ablation but meanwhile I am glad to be rid of the Flecainide.
I am not suggesting that Flecainide is a bad drug but that it doesn’t appear to suit everyone.
I'm so pleased to hear that you are feeling better now without Flecainide.
I agree with you totally. The thing is we're put on a drug then sent away to get on with life as best we can. No-one warns us how they can sap our energy. In fact do the experts know some pills can do that. I'm just so glad that the elderly cardiologist, who I'd never seen before and was probably only recruited from retirement because of the Covid backlog, was the person who recognised my poor heart rate and knew it was caused by Flecainide. I've been off it now for about 9 months, but only really noticed my extra energy earlier in the year when I first cut my back lawn.
I was put on flecainide last year when my PAF was really troublesome. I kept careful records of frequency and length of my episodes, and it was very clear the flecainide was making my arythmia much worse. With my AF nurse agreement I came off flecainide pretty quickly. As you say JeanJeanie , it may be good for some but certainly not all. BTW, I use a Kardia device to check my own ecg, very useful.
I hardly dare say it, (and also hug a huge huge tree), but I've been 90% fine since my cryoablation last year 🤞🤞🤞😊🙏🙏🤞🤞🤞😊 Now just on Apixaban. 🤞🤞🤞😊😊❤
That's great news to hear you are feeling so well after your cryoablation, long may that last.
I'd been singing the praises of Flecainide for years and putting my lack of energy down to being in constant AF. I could never walk quickly, but certainly can now.
I've had AF for 18 years and think/know that I would turn into a hypochondriac if I had a Kardia. It would make my life a misery and that of all the doctors I'd pester with my results. No, I feel good and will just stay with that feeling now.
I am convinced that many of the pills prescribed do more harm than good. I know that my heart problems originated from a doctor prescribing the wrong pill for me. Had I not taken that pill for 6 months I would not now have a problem. Delighted that you are feeling better now. Long may it continue
There are two websites which might be of interest. Number Needed to Treat and Number Needed to Harm.
Thanks for the tips re the websites, have noted them down and will take a look. My goodness re you being affected by a pill that you thought caused your AF. May I ask what that pill was?
Like you I've always hated taking any pills. My dad was a great believer in natural health, long before it was fashionable and we were brought up on a farm on home grown vegetables. He had great respect for surgeons, but not GP's and their pills. The only time he ever saw a doctor was when he was confined to bed with pneumonia. That was the only time in my life that I was aware that he was unwell. We children were never ill, never even had colds.
I don’t want to cause alarm in the people who have to take that pill because as you know everyone is different. It was Omeprazole which I now know lowers stomach acid (which in my case as I had low stomach acid to start with and so was extremely bad). It caused me not being able to metabolise the iron in my diet and becoming severely anaemic. That meant that the red blood cells were unable to pick up sufficient oxygen and transport it to the cells which were crying out for it and so the heart was pumping harder and faster to try to help. This resulted in the heart becoming permanently thick therefore stiff. Hence my problem.
Apparently in some people their stomach acid becomes less as they age. The tendency must be hereditary because my maternal grandmother had to take stomach acid pills as did my cousin. I did not know this at the time. I just blithely swallowed what the doc prescribed without question. Never again!
Hi JeanJeannie50 I would love to stop all medication but I have asymptomatic paroxysmal AF - my average heart beat in an attack is 177-186 and lasts roughly 4 hours. Also if I don’t take the medication I know I would have an attack. It is literally saving my quality of life if not life. What is the alternative for me? I also have two Echocardiograms a year and currently my heart is sound and without complications. You have made an excellent point from a position of experience, and I am sure for a lot of people it will be extremely helpful.
I'm glad to hear that your scans show you have a sound heart. Mine do too.
I've had 3 ablations and after my last one have felt much better, before then I had the same heart rates as you, horrible isn't it! Mine would last for days/weeks and I'd often end up being admitted to hospital.
Yes, it certainly sounds like you need to take your Flecainide and I would never recommended anyone stopping without the approval of medical advice.
I’m with you Jean, whilst sometimes drugs are necessary I’m a fan of keeping it to a minimum as they generally do have side effects. Stay well my love.
Good post Jean!I think we are far too eager to medicate for AF in this country. What we need are management strategies, not to have pills chucked at us with zero information. This is a typical approach: Bisoprolol + anticoagulants if Chad-Vas score indicates it. I clearly recall saying to my husband 1 week after my first diagnosis that I was pretty sure 'it had gone'. I was paroxysmal - of course it had 'gone' - and of course it came back. Point being I was on the Bisoprolol every day and didn't need it. Needless to say, AF returned and new drug regimes were brought in. Had I been better informed I think, looking back, I'd have asked yo see if i could stay on the Bisoprolol as a PiP. But that of course requires input from the medical team - to teach and advise. And the NHS is desperately underfunded, or perhaps its not in the mentality. You start a regime of daily drugs and it can be a slippery slope.
After 2 ablations and 14 months in NSR I'm finally coming off the Diltiazem I had to take to counteract the Flecainide I was taking...
It so happens I got on well with the Flecainide itself although I occasionally had to take extra pills as PiP and I didn't like to effect it had even though it stopped the AF. So for me this is more about treatment approaches rather than an individual drug. It'd take Flecainide again if I needed it.
I think I'd be tempted to take any pill if my AF came back as bad as it used to be. In my early AF days I'd end up admitted to a cardiology ward. My 3rd ablation in 2016 really helped and I've not had a really high heart rate since.
I used to feel I was better on Flecainide and sang it's praises, but when told to stop taking it I was amazed at the extra energy I had.
Hi Jean, found your post very interesting. I first suffered with persistent Afib since 2017. Had numerous cardioversions, ablations, 1 of which had a Tia during surgery. I had a pacemaker in 2 years ago. I underwent OHS 6 months ago for mitral valve, immediately after had Afib. Had to wait a month for cardioversion as was off Apixaban prior to op. Am now thankfully back in sinus. I’ve been on flecanide 100 mg twice daily. Have had Bisoprolol before which did not agree with me. I was hoping the new mitral valve would have improved my breathing but no 😢 I often wonder if coming of flecanide would help me, but don’t obviously want to go back to persistent Afib I’m due for annual check up in January so I think I will ask if I could reduce flecanide
Sorry to hear that you had a TIA. It sounds as though you've really been through the mill with the ablations, pacemaker and OHS too. Phew, I feel for you!
Asking if you can reduce your Flecainide sounds like a good idea. My goodness I've just seen that your next cardiac appointment isn't until January 2024, that's a long time to wait. Could you get your GP's advice on your Flec? My dose used to be the same as yours, but it was reduced to 50mg, mind you that rate was still upsetting my heart. So yes in your situation I would ask if you could just see how getting on with out it is. It may be better to come off Flecainide slowly, by going onto 50mg for a while before stopping. After all that you've been through I really hope that you will soon feel better.
That’s a good idea asking the GP altho to be honest mine says, “Sally you know more than I do when it comes to the heart” so that doesn’t give me a lot of confidence lol. What I might do actually is talk to the cardiology nurses who run my cardio rehabilitation exercise group on Thursday. They r very knowledgeable. Thanks x
As you may tell with my name, I have thought this a long time with tablets. I took myself off beta blockers ( with Dr knowledge ) after trying others and reducing dose and feel much better than I did on them with no ill effect on my condition
I understand totally where you're coming from and love your name (why didn't I think of that one). We are the only ones who know how tablets can make us feel and I'd never be afraid to suggest a trail without any. How is your AF now and do you still have attacks of PAF or is your AF now constant?
Couldn’t agree more , the Doctors throw drugs at you and don’t follow up , too busy as the practices are too big in my opinion.
I had felt dreadful for three years getting worse and feeling like an old woman of 90 (74) haha , but very fit before
Did not have a face to face with a Consultant for three years and my medical centre is worse than useless , the last issue I had I was dealt with by a Pharmacist !!! Who has no idea about AF !!!!just threw more tablets at me which I refused to take
In desperation I went private and saw a great EP who said I was over medicated and changed my drugs. Was on Bisoprolol and Digoxin plus others for blood pressure. He threw out the Bisop and Digoxin and replaced it with Dilziatim and I feel so much better. He also had me transferred to him under the NHS which has made me feel someone out there cares . AF is a big challenge as everyone is diferent.
I'm so glad you managed to get some help for your AF and now feel better. Diltiazem appears to be the drug of choice lately and much is said on this forum about it's benefits.
That was a good idea to see an EP privately, especially as you now feel so much better. Long may that continue.
It is my understanding that your heart needs to be normal in physicality.
Mine is not. A back chamber is enlarged. Probably as I had been left with H/R 187 Day avg for 1 year 4 months on Metoprolol. H/R avge 47 .. never changes but 2 x 2 second pauses. Exertion breathless, no energy and fatigued.
Then another 10 months on Bisoprolol up to 10mg with a H/R avge 156. No pauses.
In December 2021 ..2 years 3 months after stroke with AF finally controlled by CCB Calcium Channel Blocker. Twinked down to Diltiazem 120mg AM CCB and BB Bisoprolol reduced to 2.5mg PM.
After year on this regime of meds my H/R Day has dropped to 60s. From 88-96 when I started this new regime.
I am much improved but lost 3-5kgs, B12 700, TSH 1.0-2.0 due to Ca Thyroidectomy.
Scarring the heart I consider barbaric anyway There will be a better way of stopping the rogue irregular heart beat.
Jeanjeannie you have been through a lot. You are part of research statistics and research.
Even little old me when I refused RAI Radio Active Iodine and Suppression - the process anyone who has ca thyroidectomy goes through. but 2 years after , research from USA now say that like me 'low risk' I should make the decision. Not a necessity.
With my AF I can see that my lower BP and lower H/R help my AF. Still irregular, still I need for my blood oxygen to catch up but sooooo much improved to live with. My life now but always helpful that my AF might disappear of its own accord.
Bless you Joy, It sounds as though you've had a really tough time. I'm so glad that you now feel a lot better and have a normal heart rate in the 60's. Life can be so hard at times and we just have to muddle through as best we can and hope for some light at the end of the tunnel.
Yes, medical ideas change often now and that is good. I hope your blood oxygen soon improves. Can anything be done or given to help that?
Diltiazem certainly appears to be the drug of choice lately.
Good question! I was put on flecainide years ago and taken off it fairly quickly because it made my arrhythmia much worse. Then on propafenone which seemed ok, but taken off that after an EPS showed no reason for it. Having said that, once I progressed to PAF, amiodarone has been a godsend for me.
I hate Amiodarone, it damaged my thyroid and I'll now have to take drugs for life to rectify that. I was on it twice pre and post ablations. It didn't help my AF either. Saying that, I knew someone who took it for years with no problems.
Looking at the reports on this forum Diltiazem appears to be the drug of choice lately.
Gosh Jean, I wouldn’t even be able to remember all that let alone have it 😂 Just very glad you’re doing well. I’m still on Flec & think it’ll be life long. I think it’s true re the drugs regime, I’ve found that since my 3rd ablation, the Bisoprolol seemed to be the main drain (was on 15mg) now I’m on 2.5 and feel great. My Lossartan is half the original dose too. You are right I think that there’ll be no ECG checks in uk if all seems well, think I’ll get one in 2 years when I need a checkup Echo for valve leak. Hope you stay well and keep that grass neat, no excuses now 😆 x
Warfarin was introduced as a poison for pest control, only later finding medical uses; in both cases it was used as an anticoagulant. The use of warfarin itself as a rat poison is declining, because many rat populations have developed resistance to it, and poisons of considerably greater potency have become available.
Warfarin is derived from coumarin, a sweet-smelling anticoagulant (blood-clotting) chemical found naturally in sweet clover and many other plants. In 1954, warfarin was approved for clinical use and has remained a popular anticoagulant ever since.
I always ask for a copy of every ECG I have, would never remember what they said as my memory is dreadful!
Gosh that was a hefty wack of Bisoprolol you were on at 15mg. Have never heard of anyone on that strength before. How on earth did it make you feel?
I do my best to look after that bxxxxy grass. My favourite trick is to use weed and feed and have burnt patches for years, it's still trying to revive after my last effort. My neighbour does nothing to hers and it always looks nice!
I agree Jean! After my ablation they took me off meds then put me back because of sundry rhythm problems. But I started having giant pauses and nearly passing out on Flecainide. The EP promptly took me off it saying he wasn't a fan of it anyway . But I had had no problems on it before the ablation except it didn work . But the negative effects of it popped up after the ablation. Quite scary !X
Its annoying when we can't work out just what's happening when we're not feeling too good and suspect our heart is the cause. That's when the medical profession should be advising us, but that doesn't always happen. Fortunately the elderly Cardiologist I saw was 'on the ball'. as I think they all were more so back in his day. At times now it appears that we know more than them. I honestly think they just trial drugs on us until they get it right. Mind you the French are said to have a much better medical system than us in the UK. Have you found that to be true in general?
For the medical system it's swings and roundabouts. The NHS saved my dad's life. But quite honestly what I like about being in France is I get to choose my GP ( and am then registered with him). Also if I want to see a cardiologist , I pick one and make an appointment and don't need to see my GP for a referral. The cardiologist then sends my GP my medical info to keep him up to speed. I am then reimbursed totally or partially. ( Anything heart related is reimbursed 100%) However we pay more social charges on our monthly salary than in the UK. "You get what you pay for" so to speak. I think once you are in the NHS system it is very good. It seems getting in is the hard part . I was always very happy with the NHS when I still lived in the UK but I have been in France for 32 years and it seems things have changed while I have been away.
I am well thanks Jean and still enjoying my respite from Afib after my ablation 🤞🤞🤞. I am so happy things are going well for you after dropping the Flec . What a great call from the locum!!
I agree about the medication and hate having to take anything. My current cardiologist told me to only take the Flecainide as a PIP if I felt I needed it as my risk of stroke is no worse when in or out of AF. He also said he wanted me off it eventually as it could kill me. I didn't query why but seeing your post it makes sense as obviously it wasn't doing you any good. Glad to hear you now feel better and that you are still going strong even after 18 years of AF
Yep, still alive and kicking after 18 years of AF! I will never forget the fear I had when AF hit me, so consequently have great empathy with people just starting out with it.
I first had Flec as a PIP but soon had to change to twice daily as AF attacks started occurring more often.
After my last meeting with my EP, about 6 years ago, he stressed for me to reduce my dose of 2 x 100mg Flec as soon as I could, he was certainly not a fan of it. He did try me on Sotalol but that did nothing. I had reduced Flec to 2 x 50mg before being taken off of the drug last year. Thinking of it now I was asked by my GP last year if I knew I had scarring on my lungs, well no I didn't, why would I have that?
That's odd how your cardiologist said Flec could kill you. Think I'm going to Google that.
I agree with you 100%. I was taken off Flecainide because of the thickness around my heart! Do you still have any feeling of AFIB, like I have it every two days and it might last from 24 hours to two days! I see my heart doctor the end of AUGUST and do not know if I SHOULD try another medication or not! Last month I TRIED MULTAQ and I got so dizzy I stopped it! Do not know what to do !
Just lately Diltiazem appears to be quite a popular drug for AF, that's going by the members reports on this forum.
No, those awful attacks of PAF I used to get are no more. My third ablation may have helped with that, but I am now in constant low level AF between 60-90. It really doesn't bother me at all and I can lead a fairly normal life again.
Multaq (Dronedarone) is not used that often here in the UK.
No, I'm looking for someone who can cut my lawns, in fact they can do the whole garden! It's become a bit of a burden lately, there are other things I'd rather be doing.
Outside and Council land. The rain next door runs down boundary where the bits of concert are and the load 1 metre high of brought in soil 1997.
It runs under my concrete oath down to road and letterbox and the grass gets away.
As I wasn't going to pay $100 to have it mowed and I have a lght Environor Mower I put cut offs branches still with greenery of my overgrown shrubs over the grass. Bit by bit I have been able to mower it.
What we do or have to do!
In 1980s we didn't need to pipe off run water underground and out to the gutter.
Its a nuisance and they have put bulbs throughout their grass! Very spreading. No thanks for here.
My battery powered Environ Mower is a God send. Mow cool and connect to recharge battery. The first battery went from 2007 - 2016. Secind battery 2016 - 2023.
100 % Many of the drugs can most definitely can cause the heart to become worse off. Flecainide almost did me in. It was terrible for me! Here in the U.S., a person used to have to be monitored for a few days in the hospital after being administered flecainide before actually being prescribed it. That sadly stopped a very long time ago. Glad to hear you are doing so much better now!!
It used to be the same here in the UK, with Flecainide being started while in hospital, mine certainly was and then I had to go for an ECG a few days later.
It will probably come out some time in the future what all these drugs have done to us and their side effects, mind you lots of things are listed on the enclosed information leaflet.
Flecainide is a very dangerous drug. Unless the cardiologist is monitoring you daily then it's best avoided because it is unpredictable and can cause serious heart damage at any time.
I took it for one year and a half and ended with a thicking around my heart, they said mild and they found it with a ECO-GRAM, thank God! Now I am afraid to take any meds for AFIB. I take Metropolo and Eliquis!
I was taken off of flecainide last August Mike. I was monitored in hospital when I first started taking it many years ago. I think a lot of heart drugs are not good to take, but we have little choice if we want to live a fairly normal life. I know it's not a good drug as my EP didn't really want me to take it. What on earth makes you think it's so dangerous?
Hi Jean, I was diagnosed just 3 years ago so not suffered as long as you. I was put on Flecainide when I was first diagnosed and had awful episodes weekly (every Saturday would you believe) really fast heart rate and went for 48 hours. Paid to go and see an EP and he immediately took me off it saying it wouldn't have been his first choice of medication to for me. Flecainide appeared to cause pro-arrythmias in me. I have been on sotalol since and still get breakthrough episodes that have been every 4 months but more recently coming every 1 or 2 months. I am on the NHS waiting list for an ablation but dreading it. My diagnosis originally was atrial flutter but the EP says I have afib with possible flutter.
AF is all a bit of a nightmare isn't it, we can never quite decide what to do for the best. Do you know anyone who has had an ablation carried out by your EP?
Hi Jean, no, not as yet, but he is held in very high regard in the UK. He is head of cardiology in Leicester. A Professor who pioneered robotic ablation and I found him through an article in the Daily Mail. There are a few YouTube videos with him talking about afib and ablation and one of him using the new software mapping system. I have a lot of respect for him, he is Professor Andre Ng. I will ask his statistics of success when I see him on 6th September.
Hi Jean. You certainly have given me a lot to ponder over. I think actually it is rather fortuitous and needed that push and have now wondered a few things?
A quick history.
Diagnosed LP Afib 18 years ago. Flecainide 50mg bd (after initial IV dose) that’s never changed. Cannot tolerate a higher dose but can take extra 50mg two hours later if needs be.
Breast cancer September 2017. Surgery, radiotherapy, then 5 years of toxic hormone therapy. Nasty side effects. Finished December 2022
Apixaban 2016
Cryoablation September 2019. RF ablation November 2020. Both Failed.
Never had or been offered beta blocker alongside Flecainide. Resting HR early 60s so wouldn’t want it anyway.
Afib now every 3-5 weeks. Lasting 8-18ish hours. 2 of 50+ hours last few years. Always self reverted. Initial HR around mid to late 120s then settles to late 80s - late 90s. Only been to A&E twice in all these years due to chest pain.
Only noticeable thing since ablations is the slower hr in Afib and not so symptomatic.
Had a review with EP July 2022. Next review July 2024. EP said at last review there was nothing else he could do for me.
Now I am wondering if the Flecainide which was a life saver in the beginning has run it’s course and is now more of a hindrance? For a couple of years now I get breathless going uphill, slopes or upstairs. I always use to be a fast walker and still start off that way but then have to slow down. Neither can I do my housework all in one go, have to take a break and do it slower than I use too. Energy is certainly lacking and feel tired. I am aware of having to do a few things in stages rather than one go, like gardening, or “I will pay for it” meaning I will feel generally unwell. Is it also a reason for Afib every few weeks? Had thyroid test and all is well.
I have also suffered for years with acid reflux. Well controlled for years but has been awful since Hormone Therapy. I don’t have any triggers for the reflux and eat healthy. GP trying to get to bottom of it and is like a terrier. After all other tests were negative GP sent me for a CT scan with contrast and a paraduodenal hernia was found. Don’t know how long it’s been there but apparently symptoms are usually ongoing paroxysmal gastric disturbances and pain for years and only detected in an emergency admission or CT scan. I also am quite bloated which can be another symptom. Usual causes are congenital birth defect or trauma from surgery at some point. I am waiting to see a surgeon.
In hindsight and thinking about Vagal Afib have I been in a vicious circle for a few years. Has the hernia contributed and has Flecainide kept that circle turning?
As well as Flecainide and apixaban I take Ad-cal D3 (prescribed) magnesium and taurine.
It’s funny what being on holiday in the Netherlands, catching covid, a short Afib episode (due to the covid I’m sure) gets you thinking. I really can’t shake this Flecainide debate off though. Would love to know if I am suffering because of it these days.
Thank you Jean for starting such a good topic. Apologies for rather a lengthy response. xxx
My cardiologist looked at my ECG a few months ago and could tell that I needed to come off of Flecainide, but he was old school as I've said. I was only taking 2 x 50mg of Flec daily then.
You're journey sounds a lot like mine except that I had 3 ablations and then was told I wouldn't be suitable for anymore and was discharged from my EP's care. Covid late last year set my heart off racing crazily!
Twice over the last 6 or 7 years I took myself off of Flecainide around April time and went until about October with no AF whatsoever. Not that I'd recommend anyone else doing that. I'm a law unto myself.
I have a hiatus hernia, but find if I don't eat foods containing vinegar (hidden in a lot of things, like baked beans) or fats, then I don't have any reflux problems. I also wear loose clothing around my waist, live in dresses really. Oddly, well chewed almonds are good for reflux and raising the head of your bed can help too. I used to put books under the legs.
I’ve tried raising the bed but always woke up further down the bed! Must have shuffled down in my sleep. Even bought one of those special shaped foam pillows but still woke up further down the bed 🙄. My original GP thought my reflux started when I was originally on aspirin for Afib for 2.5 years until NICE guidelines changed. It was well controlled until around the same time as I started Hormone Therapy. Never found a food trigger. I’m hoping once the hernia is repaired it will have a knock on effect. Urgent referral, 4 weeks and still waiting. Seriously going to consider stopping Flecainide but may wait until I’ve seen gastric surgeon. What’s the worse that can happen. If Afib happens more I can start it again. Think I’m with you there and a law unto myself.
Can I ask you Jean please, what made you take yourself off Flecainide twice in the last 6/7 years and does April have any significance? Was it the onset of Afib again in the October that made you go back on it? Thanks Jean. x
What made me do it? Just the feeling that it may work, like most people I hate being reliant on pills and their side effects. The first time I had an infected tooth removed and thought that may have been causing my AF. I wrote on here about it, thinking I was cured (I should know better). The second time, again was a success for the summer months, but the third time failed and I had to go back on to my pills. Haven't tried since then.
Yes, it was the onset of AF around October time that made me go back to my meds.
Really interesting Jeanie and a bit scary really, have been on Flec since February, my cardiologist says because I am persistent AF its really difficult to ascertain the side effects I get (dizziness, wobbly and exhaustion) is the tablets and the disease! My 2 CV's have not reverted me to NSR long enough to ascertain which it is... onwards and upwards!
But I am glad that yours turned around so quickly.
I used to sing the praises of Flecainide, it kept me out of AF for over three years. I feel so much more alive since stopping it though. I can now mow my back lawn in one go instead of having 4 or 5 breaks to rest. See how you get on as we all respond so differently to prescribed drugs.
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Glad to hear you are doing so much better now!! 
Flecainide and eyesight problems - a follow up
short term memory problems - a sorry tale of forgetfulness ☹️
Me in NSR :) (with Atrial Ectopics)
Flecainide before Cardioversion
