Keep flecainide to the minimum?

[Rellim296]

I wonder if flecainide will ever get to be like warfarin and people will take a personalised dose - exactly enough to keep their AF at bay.

[Suzanne-Cheshire]

We all probably need different doses. Flecainide has never kept my fibrillation at bay.

[Rellim296 in reply to Suzanne-Cheshire]

Do you still take it and Suzanne and if so, how much?

It worked well for me at first (100mgs x 2) but when I was dropped to 50 x 2, I was in AF four days later and went back up and was AF free for a year. After that it seemed slightly less effective, although it was more like AF progressing and eventually the dose was increased to 150 x 2.

I tried taking 100mgs in the morning and 150mgs in the evening as I felt this would give me better protection overnight. If AF was going to occur I almost always woke with it. I never tried taking it only at night.

[Suzanne-Cheshire in reply to Rellim296]

Yes, I still take it, 100 mg twice a day and an extra 200 mg when the AF starts up. I think that we as individuals are the ones to know what dose suits us. It doesn't prevent AF for me but may reduce the duration. I would say, as long as you are within the proper guidelines of the drug, experiment and decide what helps you best.

[Rellim296 in reply to Suzanne-Cheshire]

400mgs is the maximum daily amount permitted I think. I just take it as a PIP now and happily rarely need it.

No one (GP, cardiologist, EP, dentist, ENT specialist or pharmacist) seems to have any great interest in the side effects I've had. That's not to say that they don't pass on what I tell them, but I've never been asked for any feedback.

[Hidden in reply to Rellim296]

Flecainide causes many people to feel tired or experience

visual changes. I got dizzy and had blurred vision when turning my head to shop or look at library books or up and down at the sky. Fortunately, the side effects disappeared when I stopped taking it daily and now only use it PIP.

[Finvola]

That's a nice thought Rellim - my EP and cardio discussed dosage of 50 x 2 and 100 x 2 and eventually EP settled for 100 x 2. I've been AF free since starting and would love to take less but don't want to upset the apple cart, so to speak.

I suppose to personalise the dose, some sort of measuring of heart cell responses would be needed - if only . . . sigh.

[Rellim296 in reply to Finvola]

I think one could test the water and see what works if there were smaller doses. This springs from a discussion about side effects I had earlier this morning with orchardworker who might be thinking of giving 75mg a go.

See 'very very nervous'

I wish I had taken a lower regular dose (I was on 150mgs x 2) and used the extra as a pill in the pocket just when needed.

[Hidden in reply to Rellim296]

My cardiologist favoured going down from 100mg x2 daily to 50mg x3 daily. I suggested 50mg in the morning (as I have always been fine am) and keeping the same 100mg at 6pm as evening/night have been the worst AF times - he said better to keep the dose even.

I then countered by saying my body is used to 6am and 6pm so maybe its best if I use a pill cutter and do 75mg am and 75mg pm - he agreed to that, which I feel is more logical as a test.

The plan is to do this in October once it has been approved by my Naturopath who is getting my Mg levels up (using the Red Cell blood test done privately not the GP's plasma test). My CoQ10 is already up to an acceptable level after taking supplements.

[Rellim296 in reply to Hidden]

It's interesting that 50 x 3 was suggested. How would that have worked with the empty stomach or an hour before food thing, I wonder. I found that quite difficult - particularly at weddings - and was never too sure how important it really was.

[Hidden in reply to Rellim296]

It can be a pain socially but I have always stuck to it rigidly.

[Rellim296 in reply to Hidden]

Yes, I did too. My other half kindly used to oblige if there was birthday cake, some small child's baking or similar handed round at an inappropriate time. I would take a bite, he would eat all of his and then quietly swap his empty plate for mine and scoff the rest. He didn't complain about this too much and we didn't offend.

[BobD Volunteer]

Wish-full thinking. Flecainide is seldom a permanent fix and for many people just doesn't work at all or has too many bad side effects.

Bob

[Rellim296 in reply to BobD]

Yes, but I feel it is dished out without a lot of thought and if we can pare down the amount we take it's no bad thing - maximise the advantages and minimise the adverse effects.

[howesgilly]

I have found flecanide so far to be a saving grace. I was just on bisoprolol 2.5mg in the past and regularly has short stints of PAF, with low blood pressure and tired all the time. Then after a troublesome episode requiring coronary care ward and flecanide drip I was swapped to flecanide, the response was instant-energy no AF and generally the low mood improved. Then it was increased to 100mg twice daily and bisoprolol 1.25mg at night. I still have very low blood pressure so stopped the bisoprolol ( 80/45 is not a nice feeling for blood pressure) but remain on the flecanide with just a few night time sweats as the side effect.

I do have to say the PAF is probably starting to break through as I feel ectopics starting after a few months but am awaiting ablation so not too worried and am cycling and going to gym regularly without any problem ( something which was difficult on bisoprolol)

Therefore, so far in my limited view I love flecanide.

thanks for reading

Gill

[Rellim296 in reply to howesgilly]

Thanks for that. Yes, I found flecainide worked well. I've never taken bisoprolol.

[Hidden in reply to howesgilly]

I have similar circumstances. I seemed to have stopped the ectopics by Mg, CoQ10, Relaxation exercises and prayer. Also, sounds like you love your exercise, I would cut down pushing yourself as I think running/sprinting, hard tennis and cycling may have brought my AF on in the first place. I miss it but I have trained myself to do just Nordic walking 1 mile x2 per day and Table Tennis - the walking with poles helps as I tell myself its a sport! and I think the firm regular heartbeat that comes with it helps 'retrain' the heart.

[Rellim296 in reply to Hidden]

Yes, I agree. The steady heartbeat has to be beneficial. Dog owners think they get a good walk but much of it is stop, start and dawdle! And it's no good taking a camera with you either. For the last 30 years I've tried to get in 25 steady uninterrupted minutes a day - a mile and a half - to keep my heart in good nick. When my eldest turned 2, I was days from my 40th birthday and I had a six month old as well and my sister had just died so I inherited her three children for school holidays. I felt I owed it to them all to keep fit, eat well and be healthy and I am a little peeved at the way my heart has repaid me.

I'm afraid my irritated state of mind drives me to exercising! The more annoyed I am, the more I walk and the faster I go. I take your point about pushing it. I'm down to about three miles a day currently and half of it outside - two of the nurses at my surgery have persuaded me not to cling to my treadmill (which I literally do as I don't want to come off it) but to walk outside the house and not deny myself sights, smells and sounds. I argue that I've had three fractures doing that (a broken pelvis prompted the treadmill purchase) but I go all the same and keep the pace down.

[Hidden in reply to Rellim296]

Rellim, reading the above I suggest you try and sideline the heart and work on your head more, assuming the gastric/stomach side is OK. The Vagus nerve (stomach- heart - brain) could be involved like me. The idea is if the head and stomach are OK it will take pressure off the heart.

Sounds like you have had a tough time with your sister passing and you may get benefit out of Mindfullness, Qigong and more exposure to Nature (with the latter I am biased as my job is promoting Care Farming).

I got just one exercise from a Qigong instructor (basically breathing in and out in a particular way) and I find that very helpful doing it every evening for 10 mins. In the first 6 months of AF anxiety was high and my cardiologist suggested a psychiatrist; never been to one before but 6 sessions were also helpful - nothing dramatic just talking through life's difficulties.

What I am trying to say is that, with Lone PAF, I think improving thoughts (about past, present or future), relationships and other related stuff are one of the important factors to avoid the return of AF. It's certainly helped me.

[Rellim296 in reply to Hidden]

That's very interesting, orchardworker, thanks. I'm googling Qigong.

If I'm going to have AF I have almost always woken with it and don't think food, caffeine or alcohol triggers it, although I rarely have a drink. Being married to a teetotaller has kept me on the fairly straight and narrow. I haven't had coffee for many years and I think the gallons of tea and coffee I used to drink could well have made my heart misbehave. Now I just have one cup of caffeinated tea in the morning. But while I was away recently we were served two identical pots of tea, one with and one without caffeine late in the day and as we couldn't tell which was my decaff, we both had half of each. I slept soundly, no AF. Generally I sleep poorly, frequently starting the day at 4.30 and need to address this. Someone said a while ago if you don't sleep well, learn how to and I haven't forgotten that I should do so.

[Hidden in reply to Rellim296]

Yes, it's sounds like the Vagus Nerve relaxation can be a trigger. Tea,coffee and alcohol and sleep pattern snap!

Any ideas on improving sleep welcome. I think it is a head thing arising from the AF experience and other life trials. It will only improve very slowly.

Also, I have been a bit lazy and not pursued my relaxation exercises more regularly during the day to see if that improves sleep length.....mental note to start that asap!

[Rellim296 in reply to Hidden]

Apart from avoiding anything that requires or encourages wakefulness in the evening, the only things I do are use a lavender pillow spray and have a night time herbal tea and eat a banana.

[howesgilly in reply to Hidden]

Unfortunately I have to cycle as I had a collapse incident one night and they queried a fit so had to relinquish driving licence. Gym is for my sanity ha ha!

[Runcrans]

Hi there , I'm prescribed 100mg at night with my bisoprolol 2.5mg was 5 but made me feel very bad so reduced this myself ,then 100mg in a morning but again reduced this to 50mg as it was making me feel dizzy whilst driving to work , this as been ok for me , just had ablation 6 week ago and keeping me on the meds till I see my ep in three months time now hopefully he will reduce my meds to see if he got the af sorted , he wasn't 100% he had , the meds make me dizzy and fuzzy headed and feel slow , hopefully going to try a jog very soon I do miss my running 😒😊

[Rellim296 in reply to Runcrans]

If one can have AF under control with a low dose, surely that makes sense! Doctors don't seem to be keen to juggle with flecainide and my point is that I think taking as much as you need and no more would be good - and easier if it came in 25mgs as well. The dose could be adjusted to suit the individual. Everyone seems to take 100, 200 or 300mgs per day.

Good luck with the running. I feel very odd if I have to miss out exercise during the day.

[Bagrat]

Don't know how I missed this last month. I am on 100mg twice a day. Have never worry it's too much about the empty stomach instruction as three pharmacists have said it is not an issue. Have been on it for four and a half years. Did try chipping a bit off my morning dose with no I'll effects as have never had AF during the day . Then just didn't any more as concerned whether it was the right thing to do. Now having eye problems . Optician had a quick exam with photos of cornea says no urgent problems but I've developed cataracts in the 2 years since my last eye test. Have eye test booked. Have been discharged from Cardio for three years as no episodes. Also? Have dry eyes so can't sort sheep from goats.

[Rellim296 in reply to Bagrat]

Flecainide can affect eyes and vision. I have minor eye issues but then I'm older than I was. Your lack of episodes though has to be good!

I've never been too sure about the empty stomach bit. Does it slow down absorption in which case is it only a problem if you are hoping to zap an attack of AF?

[Bagrat in reply to Rellim296]

Well that's what I thought. Am wondering whether to try writing to Cardio and see what happens. Have also minor bladder issues no incontinence hooray and who knows if that is anno domini or flec interfering with other nerves. Years ago we used it for nerve type pain that didn't respond to anything else. My new GP is lovely but I'm not sure how much she really knows ( looks about 15).

I am 71 and wondered if one tolerated drugs less well as getting older and also maybe needed less? If no reply from Cardio I can ask to be re referred as GP very obliging!

[Rellim296 in reply to Bagrat]

It's always hard to know, as you get older, if you are just wearing out a tiny bit or if it's the drugs you take or took. Flecainide has gone for my feet and they feel like your upper lip does when a dental anaesthetic has all but worn off. If you touch, you are aware of the pressure but it doesn't quite feel like you are touching a bit of yourself. I stopped taking it more than a year ago but my feet are no better.

[Bagrat]

What an irritation your feet must be at times. Mine have started tingling very faintly. Only notice when doing nothing. Hey ho.best wishes Wendy B

[Rellim296 in reply to Bagrat]

The feet are OK when I am wearing socks. They are worst in the night and I sometimes wear bedsocks. It was just the toes at first and a feeling of numbness, as if I had slept in a pair of shoes that were too small.

[Thomps95]

Flecenaide has worked well for me with no side effects - who knows if it will last for ever, presumably not. But I have friends who have done well on rhythm control for many many years, some up to 20 years with no ill effects.

I've heard that in the medical community there is a sense that flecenaide often "over-treats" the problem, and rate control is a more benign way to reduce the probability of AF episodes. But this just underscores the point you are making with your question. Doctors already make some assessment about the severity of the problem and the dosage needed but it is imprecise. As time goes by, it should be possible to be more precise about giving people what they need, and no more.