Arrhythmia Alliance
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I'm new here. Advice on Flecainide and Arrythmia treatment sought

Hello. I was finally diagnosed with Paroxysmal Atrial Fibrillation about 3 weeks ago. My symptoms weren't that bad. My heart used to race for a maximum of 2 minutes and then settle down. Worrying but manageable once I knew what the problem was. I am now on day 5 of Flecainide and can't remember the last time I felt this awful. Tired, brain fog, can't focus which is causing me problems at work. I have an appointment at a coagulation clinic next week. More tablets!

Could anyone give me any advice on whether I really need to take anti arrythmia drugs if my condition is manageable without them? I will be taking blood thinners for the stroke risk.

Not seeing cardiologist for 4 weeks so any advice would be much appreciated.

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Hello Pam...... of course none of us are in a position to advise you on your medication as I'm sure you appreciate.

You really need to speak to your cardiologist. On the face of it though, in your situation, I can only say that if my AF was only affecting me minimally as yours appears to be and the meds were making me feel worse, then I would want to ditch them! I would certainly want to stay on the anticoagulant though.

Are you able to get in contact with your cardiologist sooner..perhaps through your GP ?

Sandra

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Thanks Sandra. I could try that. Medication is such a personal thing. So many people seem to get on with Flecainide and the cardiologist said it was generally well tolerated. I'm trying to give it a go but may have to give in!

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Hi Pam, sorry to hear youve joined the club that every member hopes doesnt get more members. I would skip the cardio, or ask him/her to refer you to an EP. They specialize in our condition. After a 2 year hiatus from any episodes I was recently hit with 4 in 3 weeks. EP offered Flec and Metop or ablation. I convert back to NSR very nicely on Flec, but like you, possibly the worst drug for side effects Ive taken. You may not be on NOACs long either, that could be a precaution for now until they assess the degree of your afib. As for Flec, EP approved me for use just as a PIP, Pill in Pocket but with a warning that if afib increased to more than 4 per month, I would be ablated or on a standing dose of Flec. Fortunately, none since that over a month ago and I take zero meds now. Regards.

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Thank you! Yes, it's not a lot of fun, is it? I'll take your advice and ask him to refer me to an EP. I was up for an ablation straight away but he said to give drugs a go first as all surgery carries risks.

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Pam, And the EP is most likely going to be pro ablation, its how they get their bread buttered. I can never understand why cardios are so quick to put us on standing meds if we are not in constant afib. These are black box warning meds so to use on an as need basis to convert is my choice. Even with persistent afib, rate control meds which are less dangerous, most likely keep us just as safe from stroke risk. Im not against ablation, but keep in mind that success rates vary among different EPs from 60-99%. If I go that route, I want the guy that has the 99%.

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So do I!

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I go an EP in southern cal. I am in afib about 40% of the time but it doesn't really affect my workouts or tennis or any other activities. The EP has me on Eliquis and nothing else. I have an ablation scheduled for late april- earliest i can get in. My heart is structurally fine as well. So if you are not having extreme symptoms I would ask to be only on minimal drugs and if you want to be aggressive so you don't have to take meds whilch are toxic, i would ask about an ablation or other types of procedures.

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Thank you very much. I did ask about an ablation but it was suggested I tried drug therapy first. I will look into the one you are taking, though, as I am really missing my exercise. Too tired and ill to do anything at present and worse than I was before my diagnosis.

Good luck with your ablation and hope it goes well.

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I read all about the potential problems with the drugs. Based on my discussion with my EP I wanted to be aggressive and OFF drugs including eliquis so I chose the ablation route. He said i am the perfect candidate. I told him to make sure I don't get worse~!!!!!! But in addition, I am looking at alternatives. The antiarythmics and rate control drugs are too toxic for my consideration. You have to have faith in your EP and have faith in your course of action. I also am still active working out and playing tennis and rarely get tired thankfully. But if you want to talk just email me a time at dfriedman@prodigy.net

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Thank you! I am really missing my exercise 😔

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Tennis, keep in mind that ablation is sometimes done because meds have failed but that ablation enables the patient to have success back on meds. Ablation doesnt always replace meds. Success rates are subjective also. Persistent or silent afib is less than 50%. Paroxysmal closer to 80%, but again that depends on how you define success?

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I think success to me would mean being able to stop taking anti arrythmia tablets. I've been told that post ablation, blood thinners would still be needed and I could live with that.

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I never understand why doctors put us on anti arrhythmias with persistent afib? To control your rate and blood inr is the most important thing with the lowest risk. If afib is occasional as mine, why not use just to convert?

Im not sure why you would need thinners after your banking period if, ablation worked, and you are not in afib all the time? Also, thinners give you a whopping 1.2% protection for stroke risk over non users. Thinners have their risks also and have a very negative impact on bone and tissue health. Not suggesting those who need them not to take, but make sure they are necessary.

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I am paradoxly and will take my chances that it will be totally successful. I am planning hopefully to have success and be on NO drugs at all. I expect to Be off blood thinners as well. If the ablation doesn't work then my backup plan is nutrition and acupuncture

I am comfortable these results can be achieved.

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IF the EP said youre the perfect candidate, thats a good start. Now, lets make sure your EP is the perfect surgeon. My EP said I was the perfect candidate also and I politely refused. Then he offered the Flec and Metop, and I said sure, but only as a PIP.

Back to the EP. I did some research on mine and all others in every state. His record on ablation success was 69%. Not great. Natale and a few others are 95-99%. So to choose someone who has done thousands vs hundreds or less, may be in your best interest for one and done.

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Hello, How/where did you research the success rates of EPs? Thanks.

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What you say hwkmn05 is so true I feel. I had terrible AF, had an ablation 13 years ago which took away the Af totally, and no drugs except anticoagulants. But then the AF came back after 8-9 years, just a little. Now it is being controlled by drugs, but I wouldn't like to think what it would be like now if it had been allowed to progress. Not sure any drugs could really work I was that bad.

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Unfortunately, there are no long term studies on ablation, over 20 years. 8-9 years is pretty good and the maximum is 10 years for remission. Afib progressing is lethal. I dont believe afib is harmless as some suggest, besides the stroke risk.

I know of someone who has had 5 ablations but now when he goes out of nsr, converts on a high level of Potassium Chloride.

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I am post Ablation 3 week now for PVCs. I was on Flecanide before my procedure but it did not help much, it reduced the PVCs by only 25%. Post my procedure my new EP put me on Sotalol 40mg. Sotalol works great for me, but is very strong beta-blocker drug. Post Ablation I have had zero PVCs, and sleep like a baby. I would not recomended Flecanide as a long term solution for me. But I hope to get off Sotalol in two when I see my EP post office visit. My EP was great and for now think I am free of PVCs.

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That is great to hear!!!!!!!!!!!!!!!!!!!!!!!!! Good luck. We need stories like this.

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That is brilliant and I hope all continues to go well for you. I think I need my cardiologist to refer me to an ep as soon as possible.

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Look into Potassium and Magnesium to get rid of those ectopic beats. Your EP will need to write a script for a stronger Potassium because the OTC type is only 99mg. You will need more like 2-4000mg. You can look into buying in bulk powder form also. Several people I know have rid themselves of PVCs using it. Also, it will convert you at high doses.

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I was measured high in potassium and my GP was concerned because if too high and it can cause arrhythmias. That's what she said. Anyway, my levels down in the normal range again; think it might have been our bore-hole water.

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Potassium level at 4.4-5.5 is normal, however for our condition just as with Vit D levels, they either, dont maintain those "Normal" levels, or are too low for our condition. D s normal level is 40, but for our condition, I strive for 90s. Im at 55 now, but still would like to increase. GP s arent trained in nutrition/vitamins, only drugs.

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Hi Pam

I'm not sure I understand this correctly: are you saying that you have 2 min of a racing heart beat and this was diagnosed as PAF? Can I ask how often this happens and is it accompanied by an irregular heart beat? If just a racing heart beat, then it sounds more like SVT. If it is not irregular, I'm amazed it's supposed to be afib. Flecainide is usually prescribed for afib. It's one of the older first line anti arrhythmics which often work very well in bringing the heart back into NSR. But since you don't seem too bothered about the condition - it may not be worth taking the drug. As for anticoagulation, Make sure you have the right info on all of them. Ask if you need it if your episodes last for 2 min only.

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Hi Barty. I first noticed it last year when my BP monitor started to pick up the odd irregular heartbeat. Then one day out of nowhere, I felt my heart race and was a bit breathless. It stopped after 2 minutes. This happened on and off over a period of months but never lasted long. My GP did an ECG on 2 occasions and it was normal. They ignored the irregular heartbeats on the BP monitor! I actually saw evidence when I was in the gym one day and was wearing a HR monitor. Felt a bit odd and my HR had gone up to 180. Took 15 mins to come back to normal. I saw a cardiologist who sent me for echocardiogram and 7 day monitor as he said PAF was hard to catch. That, and my family history and high BP, gave him the diagnosis.

It didn't cause me too many issues and I feel a lot worse now! Have also been prescribed blood thinners.

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Pam, is your heart rate irregular also or do you just have a fast heart rate. Afib is characterised with an irregular heart beat. HR may not even always be fast. A very fast heart beat is usually SVT. I don't know if flecainide is usually prescribed for this even. It's meant to put the heart back into synus rhythm.

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Hi, the 7 day monitor apparently showed it was PAF. I notice the odd palpitations and sometimes a longer episode, very infrequent and no longer than a couple of minutes. I am currently taking blood thinners but no other medication and considering my options.

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Hi, I have been prescribed flecainide with nadalol for paroxysmal SVT after a failed ablation. So they do use it for SVT. Not sure that it works but it does make me a exhausted .

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How much Flec are you taking? If you are on 300mgs daily you may be able to reduce your dose. I was on 300 mg a day and felt awful. I have slowly reduced my dose and now I'm much happier, and still stable on 150 mgs a day. ( I tried 100 mgs but my PAF came back, so I went back up to 150 which I take as 100 a.m. and 50 p.m.)

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I was only taking 50 but didn't get on with it at all. Currently taking blood thinners only and considering my options!

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You don't seem to be having Afib, you seem to be experiencing SVT caused by PACs or PAVs?

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Hi John. I'm no expert on this but the symptoms do seem to fit. However, the consultant said the 7 day monitor showed Paroxysmal Atrial Fibrillation. I'm going to ask for an appointment with an EP.

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You should ask your cardiologist while you were experiencing a fast heart rate, whether or not the rhythm was regular or irregular. If you get an ectopic heart beat (flutter, thud or skip) that causes tachycardia in normal rhythm. That's usually Paroxysmal Supra ventricular tachycardia. If you have Paroxysmal Atrial Fibrillation the rate and rhythm are irregular. It would make more sense if you had Paroxysmal Atrial Flutter (AF). I would definitely consult with an electrophysiologist.

Here is a great video on the types of arrhythmias:

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Thanks. That was interesting.

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Hi pam i can only share my experience and my choices in consultation with cardiologist I have recently had similar experience identified as atrial flutter ...no established reason !st ever lasted 4/6 hours and was blue lighted to hospital ....echo CT scan Xray Ambulatory 24 hrs showed nothing had another about 3 weeks later lasted 45 mins aprox and a couple of shorter episodes 10 mins max no shortness of breath so just relaxed till it stopped, I am informed by my cardiologst that its not life threatening but caries a small increased risk of stroke, nothing else wrong with me and no answers to why, not on any medication by choice and cardiology was happy as no heart disease or health issues other than a few extra pounds, After my own research and not being satisfied with the lack of clarity I found this guy yorkcardiology.co.uk/benefi... I have been taking Magnesium for about 6 weeks now i have had a couple of ectopics but nothing else i am convinced it has had a positive effect, I also take primrose oil and EPA fish oil both of which have mild anticoagulant effect. I discussed with cardiologist that i prefered to make life changes rather than pharmaceutical drugs and prefer to supplement and exercise a bit more ( walking) which is work in progress lol. this is not advice just what i preferred good luck with your health journey hope everything goes well x

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Thank you for the information, and I hope you remain symptom free! I will definitely look into Magnesium. Good luck with the fitness campaign 😁

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Hi Pam. Am also new to the site so only just seen your post. Hope you have been sorted by now. I have a long history of arrhythmias going back twenty five years. I won’t bore you with the details for now. From what you say you are where I was twenty five years ago. I was initially started on half Inderal, a slow release capsule, but felt dreadful and my BP fell through the floor so had to discontinue. As I had been so sensitive to the drug the GP decided to start me on 40mgs propanalol prn (as and when) to take if I had an episode that made me feel unwell, which wasn’t often, I might take one, two or three times a year, because most of the time They didn’t bother me as they were short lived. I definitely wouldn’t take a hard drug like flecanide permanently ( I was also started on that and had a bad side effect after ten days of left sided numbness). I survived very nicely for many years just taking the propanalol. Please don’t jump into an Ablation this early, you have many more years to go yet before taking that step. Get as many years as you can without any surgical intervention. Just pop the pill now and again. And get on with your life. It’s not a life threatening condition as long as you are anticoagulated. Also I suggest you ask for Xrelto, rather than have to go on warfarin which has to be monitored. With Xrelto you just take the daily tablet and it needs no monitoring and, despite the long list, no side effects, unlike warfarin, leave it to the rats! Good luck.

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Hi Lee-J and thanks for the advice. The only medication I am taking at present is Apixaban and my usual tablets for high blood pressure (which is my main concern at present). My cardiologist agreed that as my episodes were infrequent and short (5 minutes has been the longest) I could give Flecainide a miss. I was very relieved. I am seeing an EP soon and will discuss ' Pill in pocket' with him as the episodes have become more frequent but still of short duration. I really dislike the unpredictability of this condition!

Thank you 😊

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Hi Pam. Lovely to hear from you. I know what you mean regarding the unpredictability . I have had to cancel so many things these last couple of years, quality of life isn’t good. I am normally doing rates between 116 and 145 depending on whether I am resting or active. I underwent my first catheter ablation about twelve years ago for A/fib. They isolated all my pulmonary veins and did a line of scarring between each vein, called an isthmus line. After a traumatic few months I stopped my sotalol and things improved for approx one year and I developed atrial flutter as a result of the isthmus line, which they have stopped doing now as they have discovered that patients having this were later developing atrial flutter. I had to go back on 80mgs sotalol daily when this developed and, life went back to normal for almost ten years. I started to get breakthroughs then and an EP talked me into having a second ablation assuring me I could stop sotalol and anticoagulant. He said he could use a drug to produce the arrythmias, but afterwards told me that it didn’t work, but not to worry as he had a good idea where it was coming from and did a lot of ablating. Sadly life was never to be the same again. I was doing very fast rates non stop and the sotalol had to be increased to slow it down but I ended up taking 240mg daily along with the side effects from a large dose. I would then get the odd week when I would have sinus rythmn but no more. I won’t go any further with explanations as I know you are considering an Ablation. I would say though, that if you are able to manage with a tablet as and when, do it for as long as you feel it is not affecting your quality of life. Hindsight is a wonderful thing. If I could go back four years and knew what I know now I would only have considered an Ablation when I felt I had no other option. So glad you stopped the fleccainide and hope things remain stable. Hope we can keep in touch.

🙏🙏👍👍

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Hi Lee. I'm sorry you have been through so much only to experience such a negative outcome. Treating AF seems to be as hit and miss as getting it diagnosed in the first place. I was told it was stress or my imagination for 2 years and finally had to pay to see a cardiologist privately. I won't rush into an ablation as I don't think I am at that stage yet. When my heart races for days rather than minutes, I may reconsider. I really appreciate your advice.

Do you also post in the AF Association community? I've had a lot of help from the lovely people in there, too. They are very knowledgeable, too.

Pam

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