Morning. Does anyone on flecainide experience muscle weakness and shakiness/twitching in hands and legs? It does seem to be a side effect but not perhaps a common one. Thank you.
Flecainide : Morning. Does anyone on... - Atrial Fibrillati...
Flecainide
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DebbiB28
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HI Debbie
I took Flecainide for many years 1 x 100mg twice daily and never experienced any of the things that you have mentioned. Perhaps others have, as we all react differently to medication.
Jean
Morning, thanks for replying. You're right, different effects for different people. It's just nice to know you're not alone sometimes. Might not even be the flec but it is mentioned in some of my searches. Thanks!
I stopped taking Flec last August, my cardiologist said it was probably causing the problems he could see on an ECG. Although it didn't give me any side effects that I was aware of, I'm certainly feeling really well now - more alive. Other things have happened since that ECG though that could be the cause of me feeling more lively.
Jean
May I ask if you replaced the flecainide with a different med?
At the time I was taking 12.5 Metoprolol alongside 100mg of Flec. I'm now taking just 2.5mg of Bisoprolol twice daily.
Why do you think it is the Flecainide?
Pete
Just thought it might be as the symptoms tie in with my starting it so thought I'd just ask the kind people on here. May well be just a coincidence and me jyst dwelling on it.
I can understand that. I have taken Flecainide for over 30 years and not had any side effects I can really attribute to it.
Having said that we are all so different and in my experience nothing is impossible.
Pete
30 years? Wow! I assume it has been of good use to you then?
Have you been taking flecanide all those years because you are in permanent Afib or just as preventive .
I had Paroxysmal Atrial Fibrillation all those years having episodes of AF very frequently, sometimes every few days sometimes every few weeks.
Flecainide I believe minimised the episodes significantly but did not subdue it completely.
In 2007 I had the first of a series of 7 ablations. My first EP said he could do nothing more for me after 3 ablations. He retired but followed numerous subsequent visits to hospital for cardioversions a new EP said it was worth doing more work to my heart.
The last (7th) ablation in 2017 was actually for Atrial Tachycardia as I developed AT some months after my 6th ablation.
Gradually since 2017 my episodes of AF have declined and now January 2023 I haven’t had an episode of AF since March 2022 and even that one only lasted a few hours.
My EP and I believe it best to stay taking Flecainide and I am very stable as it stands right now.
I spoke to my EP last week as I am monitored at least every year. His words were your electrical system is worn out! I have a slow heart rate now. He said that I might need a pacemaker in the future but agreed with me that I could continue the way I am for the time being.
I am now 75 and therefore I feel that because I have significant allergies to metals I am reluctant to take the step of having a pacemaker yet despite having recently been skin tested for all the components of a pacemaker.
Returning to Flecainide, after one of my ablations when all had beef calm for some weeks a Registrar decided to stop my Flecainide . After 2 days I went back into AF. I fear not taking it now
Pete
Interested to see you have/had atrial tachycardia as I too have been diagnosed with this, along with ventricular and supraventricular ectopics. However, my EP decided it was too risky to try an ablation for me…. I’m on Flecainide and Diltiazem along with the usual Apixaban and other medications for other ailments. I haven’t come across many others with atrial tachycardia
Hope you are settled now.
Thank you for your reply. I am a relative beginner at this and was wondering if I could ever see myself free of drugs. I also take digoxin but when I am in sinus my pulse goes too low so I have to have a day off it from time to time.
I realise that lots of people want to become medication free. However, whilst understandable it is not realistic with AF in most cases as without anticoagulants for example there would be a much higher risk of stroke and the prescribed heart rhythm medication is designed to improve your quality of life.
I take 4 tablets in the morning and 7 at night. They are not all for my heart but I think nothing of it. Obviously if you have an identifiable reaction to a particular medication then advice should be sought. For example I could not get on with Ramapril for my blood pressure as it made me cough, but my medication was changed to another which does not have the same problem.
Try not to worry too much about it as stress is often a factor in precipitating AF.
Pete
Possibly, you are low on POTASSIUM. This mineral is needed daily in amounts of 4700mg according to recent FDA guidelines. A banana has about 400mg., So you can see how easy it is to develope a deficency. I had weak grip and night time leg cramps. Doc suggested potassium supplement. I take at breakfast and dinner. 200mg each meal is working for me most days. Talk with your medical contact to clear it. Let us know on the forum what the outcome is for you. Be well good night.
Thank you. I will mention this with GP (if I can get to see him)!
Please don’t use potassium supplements unless they are prescribed by your doctor as potassium is an electrolyte which plays an important role in the heart. Taking too much potassium in the form of a supplement could cause an electrolyte imbalance that could lead to arrhythmias. If you increase your potassium intake from foods, you’ll probably be fine. Bananas, avocados, potatoes, spinach, broccoli, beans especially white beans, are all good sources.
However…. we don’t know what’s causing this problem and it may well be nothing to do with potassium or anything to do with your diet, or your medication for that matter, so please report these symptoms to your GP and he/she may order some blood tests to check for inflammatory and autoimmune conditions that affect the muscles. Assuming your GP is sufficiently concerned, you ought to have all the standard blood tests at the same time including your electrolytes. As these are new symptoms you ought to get them investigated before trying to second guess all the maybes.
Thank you for the information. When Flecainide was first suggested the consultant said to try magnesium and potassium as supplements -(I haven't taken the potassium) without any tests! I think you're right to check before taking anything extra. Thanks for you help.
Definitely worth checking beforehand. I’m assuming the consultant just made a verbal recommendation/suggestion without actually issuing a prescription. It’s worth following this up.
Yes it was just a verbal 'recommendation'. Will definitely mention to GP. MAgnesium seems to be a more popular 'supplement' with many people swearing by it.
My EP at the Cleveland Clinic told me 20 years ago that I was potassium deficient, this from looking at me ekg. He prescribed no more than 2g of potassium through low-sodium V8 at the time. He also wanted me to take as much magnesium as I could handle, too much does not hurt you. These helped me immensely, and for the life of me I cannot understand why ALL EP’s and Cardiologists don’t look into that for people with AFIB?! Maybe because they don’t make any money with it?
Potassium taken as V8 juice is much the same as adding potassium rich vegetables and fruit to the diet. Unfortunately in the UK we don’t seem to have the low salt version, which is a shame because the original V8 juice is delicious.
At risk of repeating previous posts, the one Magnesium that has been a game changer for me and others is Magnesium Taurate by Cardiovascular Research.
Interesting about Potassium. I do not take Potassium supplements, but to cut down on salt I do use Lo Salt which is Potassium based. I also take Magnesium Taurate and and vitamin C supplements after an online consultation with a cardiologist much revered on this forum. But I have never been tested for Magnesium levels. I have read that too much can be as bad as too little and wonder do you have similar reservations about Lo Salt and Magnesium supplements?
According to what I've been told, too much magnesium is just expelled by the body naturally and does not hurt you. Potassium however, can be toxic at higher levels, so it is best to increase your intake of potassium through foods...supplements you have to be very careful with.
Agree about supplements 100%. Don’t want to provoke an arrhythmia of any kind especially if you already have a history of heart rhythm abnormalities. Food first is a far better and safer approach. Plus you get the added advantage of fibre, polyphenols etc.
Yes, had the same problems and extreme shortness of breath. side effects were worse than an A fib attack. So, informed my EP that I slowly weaned myself off it. Thank God he respected my decision. the treatment was worse than the A fib.
I have taken 200mgs Flecainide for 9 yrs and have experienced muscle weakness. I take no other drugs and am generally fit and active. It is frustrating, I particularly noticed it when carrying the supermarket bags which are becoming steadily tougher even accounting for age.
I agree, some everyday tasks suddenly seem more difficult. My legs are also quite shaky at times. If it's nothing to worry about, then I know it could be worse!!
Hi Debbie.
I’ve been taking Flecainide for a little over 12 months now, 100mg twice a day & 50mg as pip.
I get terrible shakes, not all time, but even just holding the phone while I’m doing this, or while unlocking the back door I struggle putting the key in the lock.
I’ve spoken to my Gp & basically they’re not doing anything as I can’t get into the surgery
hi Debbie. I have been taking Flecanaide for around ten years and have developed noticeable shakiness in particularly my left arm and hand. I have suffered from shakinesss most of my life (over 60 years) but in the past two years it has been noticeably worse. I consulted a Neurologist who said it could be the fore runner to a number of very serious diseases and until I read your post I had not connected it to any of the meds which I take. Given the alternatives I hope it is the medication causing it but cannot justify any theory supporting that. Not sure that helps at all but good luck!
I have taken flecainide for many years and have not experienced such side effects.
Hello DebbieB28,
I’ve been taking 100mg of Flec twice a day for around 2.5years now & have never had a noticeable side effect other than some really vivid, crazy dreams. They were often at first but now only occasional unfortunately - some can be quite funny. Nice to have some positives with a condition that can make everyday life quite restrictive on the fun stuff….. 😂😂
Best of luck sorting it. Stay strong. 💪
Steve.
Hello, when I first started Flec experienced shaking hands and couldn’t seem to walk straight at times but this seem to disappear after a while.
Thank you!
This same question has been asked quite a few times by people having negative experiences with flecainide.It's hard to believe that 3 years ago I thought I was dying from the bad reaction to this drug. I could only shower sitting on a chair due to dizziness. I lost weight as I was too nauseated to eat. Weak and shaking all the time.
I stuck it out for a month before my body acclimatised to flecainide. Flecainide became my saving grace until my ablation.
I am currently on Flecainide 100mg twice daily. The side effects I got when commencing last April were more severe dizziness and visual problems (came off it but the AF felt worse than side effect. ) Still taking it and no problems with the drug. Just a wonder - are you taking any antidepressants-couple of years ago I had the same problem as you on those meds - no longer take that type of medication
Hope you get sorted out soon x
Glad to say no anti depressants. Thanks for your thoughts.
Hi Debbie. I experience tremors in my hands and some shakiness in my legs since I have increased my Flecanide dose from 100 mgm to 150 mgm a day. No problems at 100 mgm but too many outbreaks of AF so had to go for the best option. I have been taking this dose now for 6 months and the symptoms haven’t decreased.
Thanks for replying. It's all a bit of a lottery with how we deal with it I think.
Hi Deb. My husband is on Flecainide and experiences shakiness in left hand.. Ask for a coffee and get a milkshake.Fine motor actions a real problem. If he tries to eat a spoonfull of soup he really has a problem.
Definitely a sde effect.
I like your saying "ask for a coffee and get a milkshake" ... hope you are not offended by my comment, but it made me smile, so job done!
I had many side effects from Flecinide which I didn't fully realize until I went off of it. My new EP took me off right away and started me on Diltiaziam. My head cleared...no longer fuzzy thinking or strange feeling like something in my head wasn't quite right, my balance improved, I felt stronger, more energetic, and generally better all the way round. It was a tremendous improvement as to how I felt even though the Diltiaziam did not control my persistent Afib and Tachycardia. So, yes, there can be side effects, but not all people react the same to medications. Ozette
Thanks for replying - I can also relate to the dizziness and sometimes fuzzy head!
I get that but have never connected to Flecainide. I've been on it 12 years, had a few years on 50mg bd 2016-2021, then dose increased again to100 bd for the last year or so. Didn't have light headedness/ dizziness before on higher dose, it's not every day though .
Can I ask why you increased the dosage? I assume the lower dosage stopped working?
You'll wish you hadn't asked! In 2016 I was getting short runs of regular tachycardia not obviously associated with anxiety or exercise. One very good GP in the practice (not mine sadly) thought I should try bisoprolol again although I explained it dropped my pulse to 40s. He also thought titrate my 100mg twice a day flec down as hadn't had an episode of af since flu in 2013. Couldn't tolerate even 1.25 bisoprolol and very slowly over several months reduced to 50mg flec bd.Had a weird 2020 /2021 with ectopics, runs of regular tachycardia as in 2016, nausea, (eventually gastroscopy- gastritis) dizzy, brain fog, Finally saw cardiologist Sep who was excellent, reviewed a 2 week ecg I paid for and said it was difficult to read as "baseline variable". Anyway said felt probably short bursts af and suggested ablation a possibility if increasing flec to 100 mg bd didn't work. To be reviewed in 3 months! Things improved.
17 months later and having runs of regular tachy over Christmas I rang and have appt early Feb.
So reduced flec to solve runs of regular tachy, increased for same reason and all about the same.
Still no overt episode of AF since 2013. Sorry for length of reply
Well bottom line no AFIB is good! So can I ask...if you are the same on either dose of Flec, why not take the smaller dose? Of course your doctor would be the one to help you, but just wondering your thoughts. Sorry you have to deal with the other suff, but like I always tell myself, "it could be worse". And no it's not too much info...thank you. Alaways good to hear other people's experiences with this thing we have in common.
Ah, "and therein lies the rub". I also contend with mild to moderate health anxiety I think. Yesterday was a stressful, a good friend we have known for 45 yrs died of covid while on a Caribbean cruise (3 weeks younger than me). Additionally I am LPA for a neighbour and received questions I couldn't understand re her house sale. At this point I had 15 mins of what felt like AF though only 130s not really high. Needless to say I do NOT have a Kardia because of my anxiety.Went to solicitor's office and hopefully all sorted.
These short episodes have no additional symptoms and it stopped when I strained on the loo (TMI!).So no don't think I'll be reducing at the moment!
I definitely experience quadriceps weakness when I’m playing golf and I’m sure that it is caused by Flecainide,
Hi Debbie,
Tremors (shakes) are a well documented side effect of Flecainide. my.clevelandclinic.org/heal...
Ben.
Hi Debbi, it is a process that one has to be patient.
My EP wants me to take 100 Flec morning and night but after 3 days I have more aFib than I started with. I also end up with bad back aches. I now only use flecainide as a PIP. I take 200 at the start of an aFib episode along with 25 beta blocker. You must listen to your body! Good luck!
Thank you!
My shakes (mainly left side) began well before I was put on meds and received dx for AF. Be it the heart caused palpitations or constipation, I spent a year trying to get answers for my leg and truck twitch. Bisoprosolol calmed it a little, Flecainide I thought improved it even more but my recent cryoablation has basically eliminated it UNLESS it was ActiLAX prior to ablation then the switch to Iberogast bitters recommended by my gastroenterologist after ablation. I’ll never know but give Iberogast a go as it calms everything and I was told it is SAFE 
I’ve been on flecainide for many years. I have developed a slight tremor and involuntary twitch at times in recent years but I attribute it to a benign symptom called essential tremor. Just another little annoyance as age creeps up, I’m nearly 80 so I’m not complaining 🤪😛
I have been taking it for 6 years and don't get those symptoms. I did have gastric problems at first, but not any more. But I do think it saps my energy a bit. Could you be experiencing that as muscle weakness? Flecainide has lengthened a certain interval in my heart trace and that can lead to a sense of fatigue I believe. I have tried halving it on EP advice but the AF came back daily after 3 weeks. Best get checked out for the twitching and shaking.
I was first diagnosed with AFIB last February 2022. Since then I was having it from about once a week to once a month. First my Cardiologist prescribed me Digoxin taken daily and I took it for about 2 months but it seems that it makes it worst so I stopped. Then I started watching AFIB youtube videos advocating natural remedies, of which Dr. Guptas’s blogs are the most informative. I learned the benefits of having a balanced electrolyte (Magnesium, Potassium and salt). Most of the internet info on nutrition focused on magnesium and potassium. I also found out from Dr. Gupta’s blogs that Magnesium Glycinate is the most potent (absorbable) form. So I started taking 250 mg / Mag Glycinate and I supplemented my Potassium by drinking a cup of coconut juice daily along with eating 1 small banana everyday . All these seem to help and I noticed my AFIB episode becoming shorter and less often to about once a month or once every 3 weeks. I still wasn’t satisfied. My Cardiologist and my Family doctor keep bugging me to go for ablation. I told them that this is only my last resort and would like to try other types of medications.
My Cardiologist prescribed me Flecainide about June last year but I procrastinated taking it as I try to avoid drugs if possible. Finally in November of last year while I was having an episode, I decided to try the Flecainide. At first I tried half a tablet just in case I have an allergic reaction. To my surprise, the episode subsided shortly thereafter in about an hour and it took only less than 12 hours total episode time. My episodes usually last from 12 - 30 hours. So the next time I feel like an episode coming, I take one tablet of Flecainide. It worked 100% of the time so now I am using it as PIP (Pill In a Pocket).
I would like to add that I can feel an episode coming when my pulse rate starts going up even with no increase in physical activity. The apple watch becomes handy for monitoring. I can also feel it coming when I am having ectopic heartbeats and I tire easily. I also use an Applewatch app called HRV Monitor to track my HRV. The Apple watch automatically measures HRV every 2 hours. When my HRV starts trending up (above 100 ) and I start “feeling funny”, I take 1 tablet of Flecainide and my HRV goes back down again. A full fledge AFIB usually can be measured objectively using the Applewatch and a blood pressure monitor:
1. Elevated heart rate
2. Elevated HRV usually more than 150. In my case it even reaches 250 or more
3. Decreased blood pressure: less than 100 / 60 or about 10% or less from your normal measurement.
4. Last but not the least Applewatch can be prompted to take ECG reading and alerts me if the chart indicates whether it’s AFIB or sinus rhythm.
In conclusion, I can generally say that my AFIB is under control due to 2 reasons:
1. Balance electrolyte by taking supplements
2. Using Flecainide as a PIP.
Excellent story... it's nice to hear when someone takes this thing seriously. You'd be shocked how many just go to the doctor, and then do NOTHING on their own to help...like changing diet and supplements. This is so important. One thing you might want to keep in mind...as long as the Flec works, and that could be a long time, you are good to go. But if it starts slipping, and you get some episodes, they have now proven that the earlier you get an ablation, the better, for a couple reasons. There is an old saying, "Afib begets afib"... the more episodes you get, the more difficult it becomes over time to stop it. I've had afib for 30 years now, and back then Flec wasn't an option, but now for me it's been a miracle, as the ablations helped tremendously, but until I started my low dose of Flec, I would still get occassional episodes. Best of luck to you, and good job on taking the bull by the horns... you will be so much better off than those that don't do the extra stuff!
Hello,
I took this many years ago and had exactly the same side effects as you, I was recently prescribed it due to various issues but refused to take it.....so they had to think of something else. Good luck
Thank you for your information.
Thank you for the nice words. I forgot to mention that the Applewatch is an effective tool for monitoring AFIB as it flags it’s occurrence including the high HRV. I am a participant of the Heartline Study which is currently going on to study AFIB using the Applewatch.
Hello Debbi , how long have you been taking Flecainide, I understand it takes 5 days for the body to adjust to it.
I am back on Flecainide having tried it before for some time and found it did nothing to improve my P-AF episodes and they actually increased in length and frequency so I stopped it
I have been asked by my EP to give it another try and the unpleasant symptoms I experienced last time have returned including muscle weakness, I can barely get up the stairs now and feel like every bit of strength has been drained from my body.
My EP is aware of the symptoms I had last time but still wants me to give it ago because my P-AF has become so difficult to live with .
I think Flecainide is a godsend for some but not for a few unlucky ones .
Hello. I've been taking flec for around 7 weeks now. These symptoms have developed over this time, Any possible side effects put to one side,, they have definitely made a difference to my ectopics which were really affecting my quality of life. I only take one in the morning, and most ectopics I still have occur in the evening/morning, ,before I take that my tablet. Assume this is when tablet wears off. Although the weakness etc., is a bit worrying, it seems to have reached a level and doesn't seem to be getting worse at the moment, I hope you can manage to persevere to give it a good go! Best wishes,
I do and also periods of rapid hb over 110; as never before; I have had 9 ablations to no avail. I stopped it after 2 weeks and my heart beat has been jumping all over the place
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