I am quite new to the forum and I can see you are a really helpful lovely lot and I’ve already made a few supportive friends in the short time I’ve replied to some of your posts. I hope you can help.
I’m paroxysmal AF. Undiagnosed infrequent attacks for about 10 years, until last Summer, they were every 3 weeks, longer duration and higher HR each time. My last attack in medicated lasted 12 hours and HR st highest 184 bpm (i have an applewatch) . I went to A&E in September when I hit another attack & they diagnosed AF and prescribed bisoprolol 2.5 mg.
I’ve only ever seen a cardiologist once, last October. I was trying to taper off bisop then & was down to 1.25 mg when I saw him. He suggested as I was aiming to get off the bisop, that I had a pill in pocket, told me take fleconaide ( 300 mg in two doses over an hour) and gave me a prescription for propanolol, to take initially at the attack once I was off the bisoprolol.
When I came off Bisop in the November, I went straight into AF just after midnight. I took the PIP, reverted to SR within a couple of hours, but was scared. I went back on the bisoprolol within the week after trying atenolol, which I had a reaction to it.
I’ve been back on bisop ever since and now tapered down to 1.6 mg approx. This is due to side effects as I struggle with it.
I don’t take an AOC as I’m CHADS 0 and apparently I don’t need to yet. At some point in the near future, I do want to try and come off the bisop again as I’ve been trying out many different things with my diet and taking magnesium and vitamin D especially (I’m insufficient in Vitamin D after recent blood test) but it struck me I don’t know what to take if I have a break through attack. The regime the cardiologist gave me was as if I was no longer on bisoprolol, but I’m not, I’m still on it.
I was promised a follow up with the cardiologist in January, but never got an appointment. I was supposed to be discussing the possibility of ablation too. I’ve chased three times and I know emails have been sent to him by his secretary, but there’s been no response 😳
I have tried asking the Arythmia nurses what I need to do, but they said I should really be discussing it with him or my GP. My GP doesn’t know about pills in pocket or what to take and tells me to speak to cardiology. 🤷🏼♀️
So I’m in a quandary. If I get an attack at night would there still be sufficient bisop in my blood to just take flec considering I’d taken the initial pill in the morning? Or should I take another 1.25 bisop and wait a while before the flec? I don’t want to have too much bisop in my blood stream or go ‘out of synch’ as I hate bisop and how it makes me feel at higher doses.
Added to this, I was originally told to take 300 mg of fleconaide as a PIP by cardiology. They never weighed me. I’ve since been told ( by others in forums) it’s too much for my weight as I’m 11st ( 5 foot 8) I did Google it too snd it seems to be true. I didn’t feel great after taking that amount in Nov in one hit, I must admit. It was my first time taking it and scared enough as it was, so next time I will try 200 mg. I also had a few chest pains for a few days afterwards, but not sure if it was that.
I don’t have anything structurally wrong with my heart after the echocardiogram last year.
I am hoping to get an ablation and am waiting for a call to now see an EP privately in next couple of weeks as I’d be waiting forever with my hospital. As I can’t live like this with all the uncertainty and lack of advice and support from professionals who just seem to be waiting for my condition to worsen before I get taken seriously 😒 ( that’s how it feels) I’d really appreciate any help or advice anyone can offer who is in similar boat to me?
Thankyou in advance a sorry for long post!
Teresa
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Ok you do not seem to be that well served by you GP but that is quite a common problem so a private appointment with an EP is very wise.
Regardimg PIP from my experience different doctors have slightly different ideas within the fact that the obsolute, "don't take any more within 24hours unless you want to be really ill or worse" amount is 300mg. When I was given Flecainide as PIP I ws told to take 300mg in one hit. I was also on atenalol (never bisoprolol) but that was in 2004!
Remember that beta blockers such as bisoprolol are designed to slow you heart when in AF not prevent the AF. Flecainide is a rhythm contol drug designed to stop your heart going into AF and or return it to NSR if it does.
In the mean time keep up the life style changes, avoid getting dehydrated, avoid alcohol, caffeine. processed foods and too much meat. Read all you can on the AF Association website and above all stay calm.
Thanks for coming back…I do already do what you suggest re diet etc. I’m a pescatarian ( no meat for nearly 30 years) stopped alcohol last Summer and coffee…now in decaf 😒 no processed food etc. all good there.
I think it’s that fact that as I’m still on bisop now, so would it be ok to just take the flec ( 200 mg this time) and nothing else then if I’d taken it within 24 hrs? . The cardiologist said that I need to take my BP and depending on the top number to take 10 or 20 mg propanolol first and wait 20 mins before the flec. But I won’t be on that regime. It seemed all very complicated 😳
He had to write it down for me. The whole thing was a right palava. I took the propanolol, waited 20 mins, took 150 mg flec ( I had to cut a pills) wait half an hour, then take another 150 mg. At 1 in the morning it was a right faff.
I was going to ask the EP…but this in just in case I get an attack in next couple of weeks ( you never know ) Thankyou 😊
I have no idea why I was ever given bisoprolol in the first place to be honest. They blindly seem to hand them out at A& E with no real instruction. I had to ask if I really needed it every day as mine were paroxysmal. The consultant shrugged ‘ see how you feel’ he said. My gP then told me to take them every day. Wish I never took them in the first place, but they’ve controlled it. 😳
Yes A and E blindly hand out Bisoprolol. I was in exactly your position with that. Bisoprolol is the first port of call for AF countrywide because it's what is recommended. There are people here who take Bisoprolol and Flecainide as PiP and seem to do OK with it.
Am not surprised. None of the three cardiologists I consulted in the previous year knew about it or thought about mentioning it. Good video by Dr Sanjay Gupta on You Tube about this subject. Worth exploring.
Hi Teresa, I too hate taking any pills and used to take myself off them frequently (foolishly even my anticoagulants). I thought that I knew my body best. I've had AF for 17 years and I can tell you that what I've learnt in that time is if a pill suits you, stick with it and don't stop taking it. Our bodies need time to adjust to the pills and get used to them. The thing was no one had told me anything about why the drugs were prescribed and what they did. If your heart isn't calmed then some parts of it can become enlarged (not a good thing to have).
I take Flecainide morning and evening alongside a small dose of the beta blocker Metoprolol. The reason for the beta blocker is that Flecainide taken on it's own can at times trigger a not too nice heart rhythm which could need urgent attention. If you find Bisoprolol affects you too much ask if you can try another beta blocker - there are lots of them. I've never taken that pill myself, but I've often read on this forum it can be better to take it at night.
Flecainide has been like a wonder pill to me in slowing my heart rate. When I first took it I thought I was getting all the side effects listed and nearly gave up, so glad I didn't.
Once after taking 200mg of Flecainide - that was doses of 100mg a few hours apart, I was still stuck in atrial flutter at 150bpm. Went to my Drs Surgery, had an ECG and was then told to go home and as it was 4hrs since my last Flecainide take another100mg. If that didn't work I was to go to A&E. Well thank goodness it did work! I've never at any time been advised to take 300mg in one dose.
I hope you can get a tablet routine sorted. Let us know how you get on please.
Hi Jean,Thankyou so much 😊 you speak many words of wisdom.
I don’t know if I’m more scared of my medication or the Afib at times. I’ve tried 3 beta blockers now and each haven’t been great. Bisoprolol has given me severe tinnitus, I feel I can’t breathe right at times , my hair is falling out, I have rashes and muscle twitching, but worst, it affects my sleep 😳 that worries me because I know we need a lot of sleep with afib. I used to wake up every two hours on the 2.5 mg of this, though it’s a bit better on the lower dose, though I get only 5 or 6 hours if I’m lucky but I still wake up during the night 😒 but it seems to control my attacks, for now.
So I’ll stay on it for a bit longer. I just don’t want to lose my hearing, as I’ve read it can happen - or much more of my hair!
Propanolol made my feet like ice though I’m prepared to take it again as a PIP if I ever do get off bisop. I also tried atenolol and the tinnitus increased ten fold as soon as I took it 😳 I’m on carbamazepine for feinting for about 20 odd years ago….it interacts with loads of heart meds, which is another prob I have. There are beta blockers I just can’t take because of it 😒 as I get older and this progresses, I do worry about that. I can’t take any calcium channel blockers at all because of it for example.
Thankyou Jean fir your help. I definitely won’t be taking 300 mg again of the flec, that’s for certain.
Teresa, I can’t tolerate any beta blockers so take a calcium channel blocker instead - Diltiazem _ which suits me much better. Although we had to play with the dosage to get it right as it can cause fluid retention. Have a good chat with the EP when you see him. Hope they can sort it for you
Thankyou for coming back. Unfortunately I can’t take any calcium channel blockers because of my other med - carbamazepine. It interacts with them all. I’d love to try and get off this beta blocker. It worries me for the future as there are so many heart meds I can’t take. Thanks for your good wishes 😊 I am pleased to say I now have a private EP appointment on the 16th 😊
Make a written list of questions before you go to see the EP. There's nothing worse than getting out of the room and realising you forgot something 🤔 Above all, try not to worry. It's not long until your appointment now xx
Since 5th Ablation in 2019 I take a high dose of flecanide for rapid rate control as well as 10mg bisoprolol, rising to 12.5 max dose if severe. If it doesn't settle after 48 hours I'm to report to ED for monitoring due to the high doses.
As has been said - every level of advice is different as is every patient so what works for one will not be advised or work for another.An EP appointment is a good idea for clarification of what may or may not be best for you.
The important thing in all of that is that 300mg of Flecainide works well for you. Take the win! Don't over-think it. So you could keep taking it as a pill-in-pocket, confident in the knowledge that its going to work. If you are having a lot of attacks, you might want to start taking it every day. I was in a similar spot to you, having 10-hour afib episodes once a month or so. The Flecainide-in-pocket (3x100mg) worked well on those, cutting each event down to one hour. When I started getting attacks once a week I switched to taking the Flecainide every day, and I have had no afib at all in three months. I ditched the beta blockers as soon as I figured out that Flecainide worked and had no side effects (pretty much the opposite of beta-blockers). I have run two half-marathons in the last two months on Flecainide. Couldn't run round the block on beta blockers.
Thankyou. I’ve only taken it once and yes it did work, you are right. I did feel funny though afterwards 😳
I do over-think things. I totally understand what you mean about beta blockers, I know I’ll struggle coming off it as I did before and my heart rate rocketed and I went into Afib 😳 we’re you on bisop?
If you are on daily flecainide, you should probably be also be on a daily beta blockers or calcium channel blocker to protect from potentially dangerous rhythms when you go into afib. I also assume your heart is structurally sound? I was required to take a stress test before they would give me flecainide.
Thanks for coming back. I’m only on bisop 1.6 mg at the mo, I haven’t ever taken fleconaide daily. My heart is structurally sound, I’m told. I never had a stress test at all…I did ask about this when I initially saw my Cardiololist at the beginning of November and he said that it wasn’t needed….I suppose I will have to go along with what he says. I have a CHADS score of 0, not sure if that makes a difference. I’d read on line that it’s normally first given at a hospital setting and I mentioned that too, but he said I wouldn’t need that and I’d be ok.
Thanks for coming back, I’m not taking any fleconaide daily. The Bisoprolol alone at 1.6mg ( I’ve been tapering from 2.5) controls my Afib attacks for now. I’ve only been tapering past month. It is if I have a breakthrough attack. Bisop seems to control my attacks with nothing else. I’ve been on bisop since September last year and my last attack was in Nov, when I came straight off it the first time.
I take 100mg in the morning and 100mg in the evening. Yes, I was prescribed sone Metoprolol as well to prevent 1:1 conduction of atrial flutter. Half the normal dose though, so the side effects are not too bad.
I can only share from my experience of taking Flecainide as an extra PiP. 300mg in one go is a LOT. And although it's within limits personally I'd be very nervous taking it in one shot. I was advised to take 100 initially as PiP. There are other rate controllers you can take - you don't have to be in Bisoprolol. And Bob's right - you've been left in the wilderness- and you don't know which meds to take. That's worrying. Been there when the pandemic hit. But there's no need for it now. See if you can get your GP to be more proactive. Can you afford a private phone consult with your cardiologist or find an EP? I think that's where I'd be going. Look up the top ten EPs in the UK and book yourself in.
Yes, it’s a lot isn’t it? I was very nervous when I took it last year and even more so, now I know it’s too much for my weight. My GP doesn’t want to help. I saw him last week and asked if he could refer me back to the cardiologist for my follow up. He said he couldn’t. He said I’m not a priority, that there were people who were dying, but to keep chasing the hospital which I’ve done three times, for my follow up. I cried.
I’m not sure if 100 mg would work, but I will definitely try that first and wait for the 30 minutes before or if I take another 100 mg. As I mentioned it was 1 in the morning last time and apart from being scared, I was so tired too 😳
I have an EP appointment now on the 16th at the hospital I’d go to if I had an ablation. They have a very established and well regarded cardiac unit 😊 I’m going privately, was going to update below, but thought I’d put that here in your reply as well, so I will ask him if they could help. This appointment is to also ask about an ablation.
I found out I could do this from another post and somone on there said I should do this and it worked! It shouldn’t have to come to this though. 😳
So pleased you have a route to go now. The prescribing of meds is such an individual thing and in some ways we can't blame the medics for referring to statistical guidelines. If it's any help my EP told me to take 100 right away if AF kicked in. Wait 40 mins and then to take a further 100 if needed. I weigh just over 8 stone so I have never done this. If I take 150mg within a couple of hours I feel.weird although it does stop. However I'm on a calcium channel blocker which protects me from.AF increasing HR, which is a known side effect.
I didn't get on with bisoprolol. but I agreed along with my GP and EP that I would take one alongside my Pip, to help bring my heart rate down when I go into AF. That works well for me and my situation, the dose I take is 2.5. I can't tolerate taking it on a regular basis as it takes my heart rate down below 50bpm and I was beginning to get dizzy. My resting heart rate generally only sits at around 60 anyway. Aside from that, it also made me feel absolutely awful with other side effects.
Thankyou 😊 I just wish I could get off the stuff. The problem I have is, because it’s already in my blood stream from the lower dose now that I take in the morning, I was wondering if I should take another 1.25, or leave it. If you take it as a PIP how long does it take to work? I know it takes a couple of hours to reduce HR normally.
Even taking 1.6 mg of bisop, my HR goes to about 55 at rest. I know that if I come off bisop my HR will shoot up like it did before. I never used to have a high heart rate before….just wish I could get off it. I am staying at this dose for a bit longer and hope to reduce again soon.
To wean off Bisoproplol successfully you need to do it very slowly so as to fool your body. This can mean tiny steps down and staying on the new dose for at least 6 weeks. I am weaning off Nebivolol which is better than Bisoprolol anyway and am down to about .4mg (1.25mg divided into 3 bits). When I have an attack I take more to bring my heartrate down and put up with feeling wiped out the next day. Nebivolol does not work as well for this as Bisoprolol. If you can get down to 1.25 mg Bisoprolol stay on this dose for 6 weeks then try cutting it in half. If you are ok on ,65mg stay on this for another 6 weeks. If not try something in between. When you can no longer divide dose try going to every 36 hrs then every 48 hours. I weaned off Bisoprolol the first time I was on it like this with no problems but I had only been taking it for 6 months. The longer you are on it the more your body protests when it is taken away. This time I have been on a beta blocker for nearly 4 years so it's slow going!
For me, the flecainide can take anything between 30 minutes and 2 hours to work. I would assume that if the 1.25 of bisoprolol you take, normally keeps your heart rate at a reasonably low level, you wouldn't need to take more when you go into AF. How high does your heart rate go when in AF now that you take it?
My AF events were around every 10 days and incredibly draining. I had my 2nd ablation in November and unfortunately have had 2 full events since then. I can only hope that once my heart is fully healed I will get them a lot less often than I did before.
Hi I had to take the private route too.Unfortunately during covid we are having long waits.Not great for our mental or physical health.Very best wishes.
Well done, the best move to cut stress (a potential AF trigger itself) is making that private EP appointment; personally I would have seen a cardiologist first but no matter. Take a list of questions max abbreviated...and write down the answers in the consulting room. If the suggestion is ablation, best to go on the waiting list but in the meantime still expend full effort on getting the medication right. Should you stop all AF episodes you can always postpone the procedure when your time comes.
Although not common, to me you look like a candidate for my medication, just 200mgs Flecainide nothing else. I was diagnosed 8 years ago at 60yo, fit no comorbidities. BUT YOU MUST CHECK WITH THE EP FIRST.
Thankyou for your reply. I have seen a cardiologist - I saw him in November when I had the echo cardiagram. I was coming off Bisoprolol at that time, so my pill in the pocket regime included taking propranolol. However, my situation has changed now. Now I’m back on a lower dose of Bisoprolol for now and hence me not knowing what to do if I have a breakthrough attack….I know propanolol is quicker acting on the heart rate. If I take my bisop first thing in the morning, if I had an attack at midnight, say, I wouldn’t know what to take or do regarding a beat blocker. I was supposed to have a follow up in January but it never happened and I’ve chased three times with the hospital and his secretary. I also asked the arrhythmia nurses what to do and they said talk to GP. GP hasn’t a clue, said to speak to cardiologist! I’m really stuck.
I think fleconaide gave me chest pains for a few days after when I took it before, but I will never know until I try it again. I never got chest pains prior to that, or since, but it could have been the hefty dose.
My decaf coffee is water filtered - no chemicals in the process, would that still be ok? I use Nespresso pods.
I can’t take CoQ unfortunately as it interacts with my other med. I bought some too 😳 that other med is my real issue but I can’t come off it or change it as it could make my other condition worse 😳 I do take magnesium, vitamin D, P5P and other vits. I’m upping the magnesium weekly at the moment.
I'm in constant AF now, but at a low rate 60's to 90's when resting. To be honest I hardly think about what my heart is doing these days. If I check what my pulse is it will be sure to go up. I have a powerful mind! Keep trying to think myself rich, but that doesn't appear to work.
I've also had 3 ablations and lots of cardioversions. After my last two cardioversion in 2019, I was told I wouldn't be offered any more. I'd already been told after 3 ablations that I wouldn't be offered any more of those either, my EP said some people aren't helped by them and I'm one of them. I do think my 3rd one did help a bit though as I no longer get a sky high pulse rate. What has helped my AF is cutting out all foods and drink containing artificial additives.
Metoprolol has a very strong effect on me and I can only take 12.5 twice daily with my Flecainide. In hospital once I was given 2 x 50mg Metoprolol to try and reduce my pulse rate and collapsed when I got out of bed, The consultant came running waving a piece of paper and said look what your heart is doing. My AF nurse told me afterwards that it could have killed me and never to take a high dose again. I did tell them that it took my BP down very low when just taking one, but they still said try it. Sometimes I think we know our bodies better.
I’ve read some of your posts on here and you are so helpful….I try and avoid artificial additives in everything…
please can I ask you what you drink, say, of an evening? I drink water only through the say, orange juice and decaf coffee in the morning and usually half a glass of alcohol free wine in the evenings….I don’t drink alcohol anymore since last summer and no caffeine. I avoid sweet drinks, or artificial sweeteners. I don’t drink milk (I have almond milk on my breakfast or dairy free yoghurt) I’m just running out of ideas for evening drinks as so many have additives. I had a tonic water the other day and noticed my heart increased a few beats afterwards. If I go to a pub ( can’t remember when the last time I went in a pub actually) or restaurant with friends, I really struggle with what to drink….
I discovered Fentimans Ginger Beer a year or so ago. No nasty additives to affect my heart rate. The small bottles were on offer in Sainsburys last time I went and at £1 each, is cheaper than the 4 pack. Other than that I have caffeine free coffee and tea, Innocent coconut water (don't confuse it with the milk) - it has no added sugar, or nasty additives and will boost electrolytes.
Be aware that it's usually the sulphites (preservatives) added to wine that have an effect on the heart, there are some supermarkets that stock sulphite free ones, but you can't keep them for long.
I'm lost knowing what to have if in a pub or going out to eat. I usually have half a lager shandy and manage to get away with that. Can usually get away with one glass of red wine at Christmas, any more and I'm in trouble.
Thanks Jean,I love ginger beer - I hadn’t thought of that 😊 Thankyou! I have drunk coconut water….though not sure if I fancy it in the evening…I sometimes can’t stomach it for some reason, though I know it’s good for me.
I hadn’t thought about the sulphites 😳 will watch for that.
I feel scared to try alcohol again, yet, when I used to get intermittent undiagnosed Afib, I didn’t give it a second thought and 99% of the time it was ok. It’s a strange thing isn’t it?
Hi TeresaSounds like you are on the right tracks. As far as Flecainide PIP is concerned, I think there is a bit of trial and error involved. Perhaps ask the EP if you might benefit from taking 50 or 100mg day and night. For 30 years I took daily doses of Flecainide and Propranolol which worked well for me. When I got an ‘event’ I would take extra Flecainide up to the 300mg max allowed per day. Over the years, frequency of PAF events increased to 3 or 4 times a week. I became quite anxious about the long wait to see an EP on the NHS and went for a private consultation at about 200GBP including echocardiogram. The EP put me on his list for ablation which happened 4 months later in August 2018. Been off the Flecainide and Propranolol since then but now taking Apixaban for life! No trouble with AF since the ablation 42 months ago (fingers crossed)! Hope you will soon find a solution that works well for you. My experience has been that most GPs know less about AF than their patients. Ask for an urgentreferral to the EP or go for a private consultation.
Thankyou, I am having to pay privately now for an EP consultation and have managed to get one on 16th Feb 😊 it is about the same amount of money that you mentioned too.
My trouble is I really am scared of relying on too many heart meds, due to the side effects. I’ve had enough of side effects 😳 I don’t really want to take fleconaide daily yet unless I have to as I also take other meds too. I know we need these things to keep us healthy but I just can’t tolerate all these effects. I also hate what Afib has done to me but I know we are all the same boat.
I’m so pleased you had a successful ablation and hope it may continue 😊 yes, you’re so right, my GP knows nothing about Afib.
Thankyou for coming back and all the very best to you.
I understood from my cardiologist after l had a stroke that taking a pip of 300mg of flecanide in one go is used instead of a daily beta blocker. This is so you don't live with side effects every day from a drug. I found it scary too. It worked within half an hour. I thought the same as you that the amount was too much. I tried smaller amounts but they didn't work. It is your choice whether you want to take a drug every day ... just in case, or deal with the a.f. when it actually happens, all at once and get it over with.
Thanks for coming back to me. Sorry to read you had a stroke 😕 I’m glad I’m not the only one who finds it scary. It worked quickly for you 😊 it took about two hours for me, but I have to split the dose into two lots of 150 mg at that time and wait between doses when I was off the bisop in November. At that time, as I had no bisop in my blood, I took propanolol first, waited half an hour, took flec 150mg waited 20 mins and then took another 150mg flec.
I think if I have another attack now I’m back on a very low dose of bisop, I’ll just take the fleconaide if I was to have an attack….it should cut down the waiting too…
Hi. Vit D is sunshine! 20min a day but it carries over. If you def in Vit D you cannot break down calcium in your diet. Do have a diff test of B12 as well.
I was on Metoprolol awful drug and tired and breathless. I sort help to be referred to heart specialist.
She changed me to Bisoprolol. Improvement 186hpm down to 156bpm.
But still no energy on exertion.
Went to private heart specialist. He tried me on CCH Diltiazem 180mg ytoo much lost 50hpm within 2 hours.
Settled now on Diltiazem 120mg a.m 2.5 Bisoprolol at night
110mg PRADAXA x twice - blood thinner.
My AF was caused by Thyroid Papillary Cancer.
Found on admission for a stroke.
That was September 2019.
Thyroid removed plus 12 RH lymph nodes 05/02/2020.
Better energy with CCB and reduced PRADAXA.
I am 73yrs young.
Its trial and error. No one suggested cardio-version or Ablation.
But a friend with intermittent AF episodes had Ablation last Oct and they found 2 AFs going at same time so he was zaped. Two types Heat or Freeze.
It takes about 3 months for scar tissue to form.
Sometimes after AF and throid problems the heart returns to normal. It hasn't happened here.
Thankyou so much for your reply….I will also try the sun though it hasn’t come out much lately 😊 currently taking 4000ui a day but I won’t know if it’s helped until after 3 months unfortunately. I was low on B12 last Summer but have been high dose B12 for over 6 months and it’s now mid range 😊 you’ve been through such a lot….I do wish you all the best Joy.
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