I went into AF this morning. Took pill in pocket (Flenacide) at 10.30 AM, still in AF at 11.30 (as instructed by consultant EP), still in AF at 2.30 (previously pill in pocket has worked by now). Haven’t given up hope might still kick back into NSR. I know I can’t take any more Flenacide today, but if was still in AF tomorrow, would it be ok to try again with pill in pocket. Any advice would be appreciated.
Thanks
Steve
What dose of Flecainide did you take Steve and how fast is your heart rate?
Hi Jean
100mg, about 80 bpm, normally about 65 bpm.
Many thanks for responding.
Steve
If it's making you feel ill, then I'd give your doctors surgery a call now and explain that you're worried about your heart being in AF and could you please speak to someone urgently who could advise as to whether you should take another Flecainide.
To be honest 80bpm is a low rate, I guess you know that between 60-100bpm are considered normal.
In general people can take up to the maximum daily dose of 300mg of Flecainide for AF, but I am not medically qualified and do not know your heart situation so cannot recommend you do that but a GP could.
Jean
My af very rarely goes over 100 though Jean and usually stays between 70-90 when on meds in af and I still feel like absolute crap.
That's interesting Elli. I've never heard anyone say that before. I believe you totally, we are all so different.
I'm in constant AF, have been for two years now. My heart rate flits between 60-100. I think I may have forgotten what normal is like, but generally feel ok.
What is your normal heart rate?
Jean
I should add that it has gone over a couple of times. Highest was 125 If I remember rightly. But mostly stays lower then 100.
My resting rate at the minute is 71/72 because I’ve come off all meds 2 weeks this Friday, so higher than would usually be.
Do you take betas or do you not need to as your permanent af?
Now I think about it I would say probably the first night I discovered I had af my heart rate was probably sky high 🤔 didn’t have my watch and was not in any mood to check it 🤣 I’m sure we’ve all been through it and I was in a bit of a panic at 3 in the morning thinking I’m about to have a heart attack. Chest felt like it was going 400 mile an hour. Could have been going a lot faster than 125 although could easily be that I’m now just used to it and it doesn’t feel quite as intense as the initial af.
Yes, I take Flecainide and beta blockers to keep my pulse below 100. Have been discharged from my EP after 3 ablations, he said some people aren't helped by them and I'm one of them. I've had the really fast heart rate at times, felt hot and struggled to stay conscious. It once resulted in almost a week in hospital. Must admit that my 3rd ablation has really helped though.
The fear of a heart attack is always with us isn't it. When my gallbladder first kicked off the pain was dreadful and I thought it was my heart. Another time I had awful soreness in my chest that came on suddenly, two lovely lady paramedics came. One of them put her hand right where the pain was and traced it exactly along my chest. She knew just what it was, costochondritis, as she'd had it herself recently.
Here I am still alive and kicking. Life is good.
Your heart rate sounds at a normal rate now. Hope you're soon feeling 100% and living a good life.
Jean
Thanks Jean.
Yeah my heart rate is within normal ranges for sure but I’m not a lover of the ranges prescribed by docs to be honest. I think ranges talked about for most things are very generic and the distance between min/max can be huge.
I think it’s a very personal thing and I usually go off what’s normal for me. My “normal” rhr pre ablation and pre af was around 63/64. I realise this will normally change after an ablation but will sometimes revert back to your old normal eventually. 🤞🤞
It’s a shame ablation didn’t work for you. I’ve heard that things can be slightly easier when in perm af though? As your body adapts rather than being up and down continually? Hope it works out for you either way 👍
Thank you Jean for all your helpful advice over the years.
When I have a tachycardia episode my hr usually around 110 but varies. Dont think rate is all that relevant but it will stick at that rate throughout episode. Kardia device usually states tachycardia but no signs of AF but occasionally says signs of AF. It is not a normal heartbeat. I feel it on side of neck and instantly know when back to normal. My BP is either high which is unusual for me or extremely low like 85/60!
.when it returns to normal I feel a gush of bloodflow to my head. But Kardia device will say all is well when my heart rate drops below 100 when I know I am not back to normal. Have had these attacks for about 25 years. Atenolol although not reducing attacks make them less severe.
Have a lovely Christmas..Linda
It sounds a bit like atrial flutter Linda, if your heart rate stays stuck around a certain high level, but I'm no expert. The times when I've had flutter mine stayed at either 130 or 150bpm and my goodness the latter made me feel ill. We're all so different in our heart rhythm experiences and the effect it has on us. If someone tells me their heart is making them feel ill, no matter what rate its beating at, I believe them totally.
You have a lovely Christmas too.
Jean
Jean thanks for your helpful response. AF makes me feel lethargic (as heart not beeping efficiently), thankfully it’s not frightening. I always get anxious when in AF. It is my own fault, I drink very little alcohol now, but had three pints last night with a meal (met some friends for a Christmas get together). So alcohol pushed me over, silly me should have known better, thought I could get away with it, and I couldn’t!
Well a lesson learned, won’t do it again.
Steve
Oh dear, we all have to learn the hard way don't we!
I wouldn't worry about it at that rate. I'm in constant AF between 60-100. Yes, I get a bit more tired, but I can live with it. I think your rate will soon go back to normal. Do some nice deep breaths and relax your heart area, tense first then relax on the out breath - I often find myself holding tension there.
Jean
Max total dose of flec in any 24 hour period is 300mg.
Thanks Bob
Steve, as you know we are not medically trained therefore I cannot advise on medication but I can relay what I have been told many times by qualified medics at our Support Group meetings. Anything I say must be checked out with your own Doctor(s). Every Medic who has spoken on the subject of taking Flecainide as a PiP has said that for the first time it should be taken under supervision by medics. Nobody MUST take more than 300 mg in any 24 hour period. It is a powerful drug and the consequences from over dosing can be serious. They also say that for the best results, the full dose of 300 mg should be taken as one dose. Many here say that they have been advised to start with a lower dose and if necessary, increase progressively until the max 300 mg has been reached and there may well be reasons for this which apply to you so you must talk to your Doctor. I gather the effectiveness of Flecainide can sometimes reduce over time and this could be the reason why you have not gone back into rhythm. If you are able to email your EP, why not see what he/she says……hope you soon get it sorted….
Thank you Flap Jack for your helpful response. I thought I would initially try speaking to the AfF nurse tomorrow. I assume they have one at the hospital I am registered with (university hospital birmingham); hopefully the nurse will be able to advise or speak to my EP on my behalf. My rhythme is improving (less ragged), feel like it’s trying to get back into NSR, people with AF become very good at checking their pulse don’t they! I also have a six lead Kardia so I could also send a trace.
Really appreciate this forum for its help, it’s good to know there are people like yourself you can turn to for help and advice, that in itself makes me feel better because you feel less isolated.
Thanks again
Steve
Happy to help Steve, I’m sure everyone who contributes here would agree that it’s always nice to hear their efforts are appreciated.
I took a peek at your history and see you joined HealthUnlocked in 2014 (same as me) but your AF started only 2 years ago. Hopefully I’m not speaking out of turn, but if NSR is important to you and there are signs that Flecainide is perhaps, not as effective as it used to be, maybe now is the time to at least consider the ablation route. Provided you have done all the lifestyle things which are key to reducing your AF burden (not withstanding your self-confessed recent relapse 🤨👊🤭) the longer you leave it, the less successful the procedure tends to be…..just a thought.
The arrhythmia nurse at QEH if that's where you are, is super helpful and will always call you back
Sing well do you know the name of the nurse?
Thanks Flap Jack, something I need to think about. Appreciate your thoughts 😀👍
What is your heart rate? I take bisoprolol in the same way to reduce tachycardia and it has worked on the few occasions that I have needed it.
Steve
Hi steve.
I used to take flec as a pip and I was always advised to take it for 2-3 days when I had an attack. So if I had attack on Friday I would usually take it till Sunday. It did used to get rid of my attacks fairly quickly though. Within 2-3 hours usually.
I went around 4/5 months without an attack and when it came back it came back with a vengeance. Unfortunately I was taking it weekly if not a couple times a week in the end. The flec stopped working entirely for me. I was then put on it full time and this wiped the life out of me. Once back on bisop 8 weeks later af disappeared again and have only had a few attacks since.
If it’s not working for you then you need to speak to docs about it and maybe get meds changed to something that will work for you 👍
Sounds like you need a proper chat with your cardiologist on how often AF episodes are now occurring and whether to consider daily Flecainide (my cardio doesn't favour the roller coaster for the heart of PIP) and if so at what rate. 100mgs per day didn't stop mine but 200mgs (medium dose) did.
How are you doing now? I wasn't clear if you were taking Flecainide as PIP only or if you were administering higher dose. The latter is what I do. The first time I did this it was under the guidance of my GP right in the thick on the first lockdown. I later checked with my cardiologist and later still EP. I know you feel.bad with it but those rates aren't worrying so if you are still in AF then maybe try some slow.breathibg exercises along with a YouTube video or similar, and see if you can calm things down that way. Another thing to note about Flecainide - allow 40 minutes before eating if you are going to take it. Wait 1.5-2 hours if you eat between doses so that the digestive processes don't interfere with absorption. Others here report longer timelines but these work for me. Stay hydrated but don't get depleted of important minerals. It’s OK to eat something carby in my experience, but not heavy. More than once in A and E I've converted after a tuna sandwich and good old cuppa
Hi all
An update - went to bed 11 last night, read for an hour. Slept quite well (I do a spelling game to distract my mind - silly but it works). This morning (7.30) still in AF so having read all the guidance about Flenacide and how most people take it as a PIP I was confident that if I took further 200mg this morning I would come to no harm. So I took 200 mg. I’m fairly confident I am back in NSR, Omricon blood pressure monitor is detecting no irregular beats. Fingers crossed I stay that way 🤞
What I now plan to do :
No gym today, I’ll take it easy
I have learned a lesson about alcohol — I’m not going to risk having more than a minimal amount again, it just ain’t worth it!
I’ll most probably pay for a private consultation with my EP in the New Year, (Mr Kalla - I have confidence in him) to discuss merits of doing an ablation, as Flap Jack discussed above, and future approach to taking Flenacide as PIP.
I have kept my weight off, but I’ll look to lose another 7 pounds in New Year
What I really need to do, is to not let my mind go into overdrive when I go in AF, and stop worrying about it so much
A big, big thank you to all of you for all your help and feedback, it makes such a difference 👋👋👋👋
Hugs over the ether
Steve
Good news steve 👍
Just curious, are you symptomatic when in af? I only asked as you said your only fairly confident your back in NSR? Personally I know instantly when out and back in again. How often do you get the attacks?
I’ve had an ablation myself 5 months ago and while I totally agree with flapjack that in terms of ablation it’s the earlier the better, depending on your frequency of attacks I would not dive headfirst into something as permanent as an ablation. Some people find that they can rid af just through lifestyle changes alone, you have to catch it early from what I’ve read and be very strict but it is possible.
If I were you I would read the book “the afib cure” and try the lifestyle changes for atleast 6 months (better a year) before diving into something that permanently scars your heart. Clearly I think ablation is the next best thing as I’ve had one myself but if you could rid your af just through lifestyle change alone then it’s a no brainer for me. You could even give it a few months of lifestyle changes and then get yourself on the list for an ablation, as usually takes a few months anyway, and then continue lifestyle changes until ablation date. You may be surprised and find you don’t need it.
That’s how I would go about it anyway.
Good luck either way 👍
Hi Elli
I have made life style changes, I have lost over 3 stone, eat healthier and do regular exercise. When I was first diagnosed with AF I was in persistent AF, it is now intermittent, my consultant puts the change down to the life style changes. Drinking the other night was a relapse 😒
Like you I also know when I go into AF, pulse is really ragged, don’t feel well. As I start to move out of AF my pulse becomes calmer and less ragged, to the point where there are just one or two irregular beats, and the AF feels like it is just hanging on. Is that the same for all of us? Pleased to say I am still in NSR. I once had a strange experience, I was in AF, felt a little faint and felt my heart immediately flip into NSR.
I’m fortunate in many ways as my heart does not race when in AF, that must be very distressing.
Thanks
Steve
Sounds like you’ve done well then steve 💪 and on right track!
I’d read the book if I were you then you’d get a better idea if you’ve made the required amount of lifestyle change in order to give it the boot. Doesn’t work for everyone of course. You’ll understand once you read book but you have to be pretty strict. Some people might not be prepared to go to the required lengths.
The book does suggest ablation if lifestyle changes on their own fail but lifestyle changes needed in addition if you want the best chance of the ablation being successful.
Sounds like your on the right track anyway 💪 what’s your bmi out of interest?
Good news your in NSR 👍 my heart normally pops back into NSR pretty rapidly and I’m just left with the feeling of being absolutely shattered 👍
Edit : by the way I didn’t write the book neither am I affiliated with it 🤣🤣 it’s just a bloody great book with loads of great info for us fibbers. Especially those considering an ablation 👍
Hi Elli
My BMI is 28; I’ll get the book and read it and let you know what I think.
Have a great Christmas 🎅🏻😀👍
Steve
Sorry to say then mate but sounds like you’ve still got a little way to go. Think a healthy weight is an absolute must and a bmi of 24 is a good target to aim for and that’s just for starters.
Like I say you’ll understand more when you read/listen to book but there’s quite a few biomarkers that need to be brought into acceptable ranges and weight unfortunately is one of the big ones.
I listened to it on audible first and then got paperback as reference 👍
Hope works out for you. Good luck and have a good Christmas 🎅🏽 👍
Hi Elli - got the book also but going to read it in the new year. Intresting though you say about BMI must be under 24. I’ve just done mine on NHS website which indicates I’m 26.9. I hadn’t considered it to be an issue. I’m 6 feet tall, sporty and 14st 3 yet it says in need to be 13st 3 or less. Food for thought (excuse the pun)
Don’t quote me on the 24 but I’m pretty sure that’s what it was off the top of my head 🤔I would have to double check the book.
Again the ranges the medical community use for bmi are pretty ridiculous as according to the bmi calculators I’m still at a “healthy” weight if I’m 8st 13 which is bloody ridiculous. Lowest I’ve ever been is 10st 5 and that was years ago. If I went to 9 stone I would be a total bag of bones. Definitely not healthy. But the 24 bmi is a good target to aim for.
As with everything it should be adapted to your own personal circumstances in my opinion. If you’ve got a bit of a rubber ring going on and your not in the pool then chances are you need to trim down a bit 🤣 but if your walking around like Arnold shwarznegger with no fat on you and your bmi is 25 then safe to say your ok 👍
Steve, before ablation earlier this year I took PIP for my PAF. My PIP regimen was to take 50 mg metoprolol at onset (to slow heart) then 300mg Flecainide 30 mins later (one dose). This is the PIP dosing procedure recommended by the Mayo Clinic here in the US. Over the course of 5 years and nearly 40 AF episodes this medication protocol worked every time—within 2-4 hours for me. If you google “Flecainide effectiveness timing” the first item that pops up is a study examining several other clinical studies on Flecainide effectiveness. Most of those studies used 300 mg single dose (maximum 24 hr dose). My doctor instructions were to come to ER if I was still in AF after 24 hours—which never occurred because it worked for me every time. The drawback of the 300 mg dose is that it totally wrecked my body for a couple days after. The dreaded Flecainide hangover! I can see taking more than 300 mg in a day being too much. Good luck to you and stay “on the wagon” as they say here in the old West.
Hi Seasick. (I’m a fan of Seasick Steve)
Don’t know why my EP only said take two 100 mg doses one hour apart. Think it may be because if you have one 300 mg dose, initially you need to have the first dose in hospital to ensure there is not a reaction. I will ask the question when I see my EP.
Where about are you in the ‘old west’, never been to the States it’s on my bucket list.
Have a wonderful Christmas 🎅🏻🎅🏻👍😀
Steve
I don't have any heart disease or other major health issues, so the 300 mg dose was apparently ok for me (?). I have seen that this dose should be first administered in the hospital under the supervision of doctor, but I had several very comprehensive heart tests/exams when this first started--so perhaps they felt ok with the single large dose for me. I am in the southwest of the US in Arizona--the Grand Canyon state. 🎅🎅🎅
That’s interesting seasick I wasn’t aware of that 🤔 no one ever mentioned to me about taking more flec when I was using as pip. They just told me to go on it daily and it killed me!
Wish I’d tried that route now 🙄
Hey Elli, Sounds like you were on flecainide for the prophylaxis effect (maintenance/prevention daily dose) as opposed to PIP full-blown bomb dose. I would only take it (300 mg) when I had an AF episode.
No I was taking it as a pill in pocket for months prior to being told to go on it daily as it stopped working for me. My point was no one mentioned taking more they just suggested I jump straight on it daily as it wasn’t working. Wish I’d tried taking max dose to see if that got rid of it. Who knows now. Oh well, hopefully my ablation has done the trick anyway 🤞
Just for comparison, I use 50 mg metoprolol as PIP. It usually takes 1-6 hours to work. If I take it when I first feel symptomatic, sometimes I can stop it all together. Once it starts it takes longer to resolve. My heart rate in AFIB is usually between 100 and 150 and gradually slows after I take the PIP. Stroke is generally a bigger concern than heart attack. As long as you are on a blood thinner you should be Ok. However, as someone has already said, if you feel Ill, it is good to check in with a doctor.
Hi Steve I don’t know whether this will help but 15 years ago I was put on pip of 150 mg of flecainide. Eventually for some reason it was changed to 2.5mg of bisoporol followed by an hour later 100 mg of flecainide, this seems to work quite well for me. Funnily if I take the flecainide at the same time as the bisoporol, it doesn’t work. Obviously you have to be advised by your own doctors.
Flecainde pill in the pocket 
Flecainide as “pill in pocket” 
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Pill in the pocket approach 
