Since 22nd May I have been lucky to have one day free from a.fib. Prior to this I would have small episodes lasting under an hour with the occasional very fast one needing medical intervention a couple of times a year at most. I take flecainide twice daily and since 22nd May, an extra 50mg flecainide for breakthrough episodes.These episodes last from 5 to 12/14 hours. I’m now wondering, as flecainide is pro arrhythmic, could it be the culprit in causing the a.fib daily.
Thismorning I awoke with this dreadful beast at 7am. My hr today, drops to 47 and jumps to 138/50. I am, and always have been, very symptomatic.
Any advice/opinions greatly appreciated.☘️
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Eirecara
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Yes Bob, I am very careful with my diet, no alcohol, don’t smoke and I’m not overweight. I have an appointment with an EP in Dublin in late October to discuss ablation as recommended by my cardiologist. Then there will be another waiting period. Thank you for your reply. ☘️
I can’t imagine being in a fib that long. I’d lose my mind. So sorry you’re going through that. And to see insult to injury, you have to wait 4 months to see a EP? Why does it take so long? I don’t mean to get political, but I’m in the US and I saw a EP the same day I had my first episode of a fib, and had my ablation the next day performed by the chair of the cardiology department of the hospital network. I can’t even fathom your suffering. When I had a fib, I was also incredibly symptomatic. Trouble breathing, panic, weakness, shaking, confusion....
Ben, I am in Wisconsin and my appointment to see an Ep is July 17..a 3 months wait. I am told by many on this forum that I am lucky, and many in the US are waiting 6 months to see an EP... My 92 year old mother in England got a hysterectomy at 2 days wait...100% free and a great job. So it seems that Ireland/UK/US has much variability... I have had 59 years with the NHS in England and 12 years in three States in the US
Unbelievable! I guess it varies greatly by state. Here in Dallas, TX we have a really strong healthcare infrastructure, unless you are in the VA system. My procedure only cost $1,500, which is my annual out of pocket maximum. But to be accurate, nothing is free.
My annual max with United Medicare is $5,900. My wife is on private insurance and her deductible is $7,000... so she pays everything up to that. My mother's hysterectomy in England was free to her, and paid by the Value Added Tax on American and Chinese tourists in London.... "Free at the point of use" is how the NHS was set up... Yes nothing is free, but having a credit card machine stuck in your face while on a trolley in emergency with a 150 pulse (happened to me in April), has to be wrong...
check with your cardiologist about the Flecanide- and try and have a ECG as they will be able to see what the `flecanide may /may not be causing. Look up all the calming/meditation ideas people have put on this site- some very good ideas to help you through this. Sorry it's so bad
I discovered that Flecainide was keeping me in AF. I stopped taking it and next day I was back in normal rhythm. At first I thought Flec was the most amazing drug for my PAF, but my attacks happened more and more until I was on it all the time. I've also discovered that fillers in so called health pills have an effect on my heart.
Just to reiterate what JeanJeanie has posted - I am also sensitive to the fillers used in different brands of Flecainide- I found out when I experienced similar symptoms to you - my episodes became much more frequent although usually less intense than previous- basically my heart seemed to be grumbling for much of the time with frequent ectopics at night and in daytime so requested to be referred back to my EP In the meantime I realised that the brand/supplier for Flecainide had changed - I found a chemist who could supply my original brand and within a week I was back to normal (ish). My EP later confirmed he often sees this in patients So thought it was worth mentioning!! Take care. Liz
Fits with my experience - a change in manufacturer often results in a difference in efficacy of the drug although I can’t find a doctor who would agree as they all say it is about the active ingredient.
My nutritionist, who knows my history, recommended a B vitamin product and it was about 2 weeks before I realised it really wasn’t helping and I was feeling weaker. I looked up the ingredients which included 3g of Magnesium citrate as a filler. Whilst that wouldn’t be an issue for most people, certainly was for me!
This is very interesting. I take 2.5mg of bisoprolol every day to alleviate ectopics and for the past several weeks I've had a lot of ectopics. I picked up my new prescription on Monday, which were a different brand, and today, I don't think I've had any so far. By this time I'd have had several already. It could very well be the filler in the previous brand didn't agree with me.
Flec seems to be a tough one to call. I`ll link to a thread I put on last week. It seems to work for some but not others. I thinks Bob`s point to make an appointment with an EP is certainly something to consider / do.
All I can say is my own experiience.This time last year I was on 100mg Flec,twice a day.Every day had AFib and sometimes Flutter. One day I forgot to take my eveni g dose and didnt wake up with AFib...long story short,I was able to reduce,then stop it except as PIP,..after consulting with EP.
I think if I were you,I would want to have some discussion about your options here.If you can afford it,a private consulation costs between 150 to 200 pounds,you see them virtual!y straight away..xxx
I agree it's time to see an EP for ablation consultation. The more you have afib(symptomatic sucks doesn't it!!!), the more damage it's doing to your heart. Also the more you are out of rhythm the more it wants to stay that way. I started with flecinide and at first it worked and REALLY didn't. It can make problems worse for some people. Then we tried amioderone and the side effects were the worst! I am now on(for me) a life saver! Sotalol 2× daily which keeps me out of flutter/fib, it's working great, but not a common medicine used. With all that afib and the length of episodes you are on a blood thinner, right? If not ask your Dr. After the the flecinide failed I had my first ablation. It took three more in two years to stop my heart defect induced arrhythmia(atrial cardiomyopathy). I am still on meds after a year from my 4th ablation. Sotalol, Metoprolol er, Eliquis, Magnesium. SO MUCH BETTER! See an EP before you get stuck in constant chronic Hell! I almost didn't stop mine in time! Good luck and keep us informed of what happens.
I also tried amioderone over 10 years ago. It was great for stopping the arrhythmia but I had to stop taking it due to horrible side effects. I took sotalol also, but it didn’t work for me.
Yes I am taking one of the newer anticoagulants ‘Lixiana’. I also take Diltizem 240mg daily, and a small dose of propranolol, (and self prescribed magnesium powder, no fillers etc).
Poor you - so sorry that you are suffering so much. I found that Flecainide made my AF much worse and it had to be stopped. No-one told me this could happen when I was given it of course. Sotalol kept my AF much more under control for many years. We are all different though and react differently to the many variants of our lives. Definitely time for your medics to try some other approach. Good luck.
I had a terrible experience of Flecainide. I was taking it (300mg) as a pill in pocket for Paroxymal Lone Fast AF. I took it twice, a month apart, it worked, corrected my heart in less than an hour, then the 3rd time, it worked but I had another episode the next day, which had never happened before, took the Flecainide, then another episode the next day, I had 7 episodes in 10 days and ended up in some weird severe Ventricle Tachycardia and was rushed to hospital. It was clearly the Flecainide causing this increase in episodes. This was in Feb, stopped taking Flec and episodes returned to normal frequency, 2 or 3 a month. Saw a different EP privately and he said he would never prescribe 300mg as a PIP. I know many many people have great results with Flecainide, I didn't. I am currently excluding gluten from my diet, its early days but not had an episode for 4 weeks so far, but it will need to be 4 months before I can be sure it is making a difference.
Has the no gluten made any difference? I am looking to solve the riddle of why when my Fast AF kicks off it is only whilst I am lying down, often asleep. I suspect inflammation from gluten?...
I am only 5days into a gluten free diet so time will tell. But the reason I stopped gluten is because after eating wheat, rye, or barley, I get really bad heartburn, and I have seen on YouTube that ‘the York cardiologist’ feels there is a gastric connection to a.fib. Also, I agree that gluten causes inflammation. Four weeks without a.fib sounds like heaven to me right now. We will see. Best wishes☘️
I am also vegetarian, and avoid most processed food etc... and gave up alcohol and caffeine 18 months ago when I first had AF. All very boring I know! Not sure the no caffeine and no alcohol has made any difference, but don't want to test that just yet. I feel a massive difference though with the no gluten (90% no gluten not completely as can't resist a biscuit or similar now and again). Heart feels much more stable, I feel less heavy/bloated and have a lot more energy. 4 weeks no gluten, 4 weeks no AF.
I haven’t eaten meat for many years. For nutrition reasons I very occasionally eat fish ( only non farmed) Have started a gluten free sour dough to see if I can make some nice bread etc.
It’s ablation time! You sound like where I was prior to my ablation 2 1/2 years ago. But all is good now with no afib. I still do take the Flec but with no side effects. You need to go NOW. If you wait any longer you will go into permanent afib and the chances of a successful ablation go way down. Make damn well sure you find a super experienced EP and get her done!
Eirecara: Your story sounds much like mine. Flecainide, Tikosyn, Amiodarone...none worked, but the afib got more and more persistent. Had numerous cardioversions, two ablations...still nothing. FInally had a mini-Maze procedure in April and so far, so good. Personally, I'd jump right to that, (even though it's more invasive) after about three years of persistent afib and all the disappointments of having nothing work. But you never know and that's the sequence of events the cardiologists suggest. Everyone is different. If you're in Wisconsin, there is a guy in St. Louis who my cardiologist recommended who is very good, Dr. Damiano. I didn't choose him because it's too far away for me (Oregon). If you have to wait three months, hopefully you're at least on a blood thinner to prevent stroke. And try to keep in mind, no one dies from afib. All the talk about diet: again, everyone is different, but my brother raises all his own organic fruits, vegetables, doesn't eat meat, is healthy as a horse...and now found out he has afib just like me. I think my dad did, too, but no one talked about "afib," it was "palpitations." (And HE was a doctor!) Anyway, didn't mean to be long-winded. Just wanted to commiserate and suggest Maze procedure if nothing else works.
I don't know anything about you, but if you are relatively healthy and young, you might try what I found out below. Doesn't cost anything and if it works for you, you can go off any meds for a few years (15 years for me). Good Luck.
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After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar was the culprit. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again. It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out.
Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. So you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. Good luck! - Rick Hyer
I have done some research into this over the years, and I know my body is sensitive to processed food sugar/salt etc. Thank you Rick.☘️
Getting overly hot leads to more sweating, which leads to a little dehydration, which is a trigger for Afib. It's probably the dehydration that's triggering your Afib. See my cut-and-paste below:
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After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar was the culprit. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer. If you keep your intake of sugar below your threshold level your AFIB will not happen again. It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 2 or 3 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out.
Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. So you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. Good luck! - Rick Hyer
John, I discovered that buckwheat flakes (it's a seed not a wheat, but looks just like oats used in porridge) were better for me. I make my own muesli/porridge type breakfast with them along with organic dates, sultanas, pumpkin seeds and lactose free milk. I put it in the microwave for 2 mins, stir and add more milk if necessary, then pop back in for another 1 min. Sometimes I add some linseed or a little cinnamon.
Yes, I used to have porridge for breakfast too, but not since Christmas. Now into my sixth month AF free. Stopped my Flec and beta blocker in January too, I swear they were keeping me in AF.
As far as I know, the protein (gluten) in oats in not the same as the gluten in wheat barley rye spelt. However I get acid reflux when I eat oats. I have tried eating buckwheat (as mentioned by Jean) cooked from seed but wasn’t to my taste. You can also eat them in place of rice. Perhaps the flakes are more palatable. I hope you get on well with it☘️
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