Hello everyone, this is my first time posting here.
My husband was diagnosed with AF 5 years ago when he was 45. He was on beta blockers for a while, which he hated as they lowered his heart rate too much. Eventually he came off all meds and had Flecanide as PIP. We had a period of almost 3 years with no AF. Life was good. Then about a year ago it started happening again. It’s now happening every few weeks. Always at night.
His cardiologist has always stuck with medication and has not recommended an ablation. But I don’t know if that’s right. He has discussed taking Flec preventively. But are there any long term effects from doing this?
I’m scared about the future. We have two teenaged kids and a full life. I don’t know what the next steps should be. He feels light headed when in AF so it’s not as if he can just get on with it, it’s really disruptive. It’s happened on holiday twice and it was so scary, especially for the kids, having to go to A&E in a different country etc.
I just feel really down about it. I hate the idea that we just have to live with this hanging over us all the time.
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Jellyfish19
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First - it’s very natural to be concerned but be reassured that AF is very, very rarely life threatening and very different to Cardio Vascular Disease.
Second all treatment for AF is for management and will depend upon individual circumstances so the questions you ask will all have caveats.
Thirdly what feels as though an emergency to you, is not considered an emergency by A&E so many people sit through AF without seeking medical attention so although it may be scary, it is not normally emergency unless accompanied by pain, fainting, clammy skin and extreme breathlessness - in which case you should ring for help immediately. Actually I’ve had much better treatment from hospital treatment from A&E in countries other than UK where I’ve sat for hours before being monitored and never received any treatment for AF as most A&E will not treat if you are being seen by a cardiologist - unless of course you are an emergency.
Yes AF can be disruptive and many people find this is the most disturbing symptom of AF as you live in uncertainty as when it will strike next. Learning to feel secure whilst living with uncertainties needs practice and a plan. Your children need reassurance so informing yourself so you can help them cope and support your husband is essential so I would suggest you head to the AFA main website and read, research and then come back and ask specific questions, when you know the treatment options.
You say AF starts often at night suggesting one of two things - sleep apnea or vagal induced AF so research symptoms of both.
Look at Lifestyle first and foremost as a treatment and look at stress management first and foremost:-
sleep - ask GP for screening for sleep apnea
exercise - too much can be as much as too little,
eating plan - some people find certain foods can be triggers but generally the advice is to eat small meal, often rather than larger meals and eat nothing for at least 3 hours before going to bed.
There are lots and lots of support and information here so rather than overwhelming you at your first post, digest and respond as that alone can help as you realise you are amongst many caring and knowledgeable people happy to support and I am sure you will receive other replies.
Know that ablation is a possibility but not always a cure but always worth exploring.
Thanks so much CD for taking the time to reply. It is so helpful. We have been told his AF is vagal. Also he is very tall (6ft 5) - we have wondered if there an association between height and AF.
I’m pretty sure there is a link between height an BP, which is also controlled by the autonomic nervous system of which the vagal nerve is part. I’ve also read they have a higher risk of developing AF.
I would push to see an EP. Lots in uk. Where are you based. Ablation is not a cure but when it works it can keep AF at bay for a long time. I had mine in 2013 and mainly free of AF since then.
As others say, look at diet, sleep apnea etc. Lifestyle changes can make a huge difference.
This is not necessarily going to cause him major issues as can be managed and you can all lead normal long (!!) lives.
You say cardiologist? There is a special type called an electrophysiologist (EP) who specialises in arrhythmias. These are the guys that do ablations. Ask to be reffered to one.
At his age ablation is always a good idea. Take heart that AF is life changing not life threatening and that many people live long and productive lives with AF. Life style is important of course. A switch to a more plant based diet with less meat and processed foods, no alcohol. no caffeine, reduced stress and a good BMI of 26 or less have all been shown to reduce AF burden. Go to AF Association website and read till you drop is another good stategy to understand this mongrel condition.
Thank you BobD. Do they have EP’s in the UK? That’s where I’m based.
His BMI has always been in the healthy range, he’s a physically fit person. But he is very tall (6 ft 5) and we had read that this can increase risk of heart arrhythmia. Has anyone else here had experience with being taller than average and having AF?
Anything which makes the heart work hard, such as over exercise, endurance athletics, flying jet fighters etc can cause AF so there is no reason to think anything is off limits.
I can suggest from personal experience a private appointment with a trusted cardiologist to discuss regular daily Flecainide of 100mgs or if AF doesn't stop up to a medium dose of 200mgs.
It is uncommon but one or two here like me take this drug without a Betablocker, which means energy levels stay normal; a risk (the level varies dependent on the individual) comes with this approach but AF is all about taking measured medic approved risks, difficult to accept initially but gets easier. I have been fine for over 8 yrs now with just 2 very brief AF episodes brought about by known triggers. I would also suggest you read up here about lifestyle changes (eg reduce exercise levels ), as I believe they are a key part of staying AF free ie don't just rely on the drug. Hope something there helps.
Hello, I've been taking flecainide as a preventative since being diagnosed 15yrs ago. I take 50mgsx2 daily with no beta blocker or in fact any other meds at all apart from my nightly statin and not noticed any energy levels drop although age is creeping into now as I'm 71 and only 55yrs at diagnosis. I very rarely notice AF but palpitations and tachycardia most often so i try not to let it get in the way of life just taking some sensible precautions as i get older.
Angie
I would definitely push to see an EP at a big cardiology department (you don’t have to go to the nearest) / teaching hospital. Early ablations are the more recent best practice. Good luck..
and There are EPs in the UK - simply means electrophysiologists.
I think seeing a private cardiologist rained as an EP (electrophysiologist) would be my next step if the NHS isn't satisfactory. The cost would be about £200, with the same again if an echo and ECG are needed, and add on £750 if a stress cardiac MRI is required.
I don't think an ablation is always the answer, myself, having read all I can on this. That said, I had one for my atrial flutter in 2019 as the cardiologist I saw back then said it was the only real way out of the mess for me but that was because I couldn't take many of the drugs available as my heart's timing wasn't good enough for them, and that they don't work so well for flutter, anyway.
But what I recall most that will help you is when he told me that these arrhythmias, while they feel that they might be dangerous, indeed, while they are happening bring on that awful feeling of impending doom, are not - in most cases - harmful. What is needed, he said, is to protect the lower chambers by controlling any persistent racing heart, hence the need for a beta-blocker.
I totally understand how you feel having had to translate my long list of AF problems into french just in case I needed to be admitted on holiday! Im now on dronedarone (3 failed ablations in 20 mths) which is working so far 🤞🤞🤞🤞
I’d push to discuss an ablation. That’s what I did after my flecanide kept being increased to manage increased AF. Like others have said it’s worth looking at lifestyle as well. Strenuous exercise was the main trigger in my AF.
What exercise and level of exercise did / do you do and how old were you when you became symptomatic? If sounds like you may have similar history to me.
Hi Speed. Apologies in advance for the really long response. I was extremely active throughout my school years. I played basketball and badminton and trained pretty much every day sometime multiple times on top of being out with friends playing football when I wasn’t training 😂 my school holidays consisted of my parents taking me camping and we’d go cycling nearly every day. It was great. After I left school I kept on at playing football 4/5 times a week. My first AF episode happened when I was around 28/29 when I fainted playing football. Doctors thought I had a virus as any AF had cleared before I’d seen anyone. It was probably another year and a bit before I had another noticeable AF incident when I discovered sitting on the couch that I was in AF. It didn’t resolve itself and I had no idea how long I’d been in AF so had to wait a month for a cardioversion. I was put on Flecanide and beta blockers after that. That worked for just over a year at a low dose and I continued normal (for me) exercise until it happened again. The dosage of flecanide was increased and I got about 9 months or so before it happened again. At that point I had my first ablation and came off all medication shortly after. Got about a year and then during football again I went into AF. I had my second ablation and followed the same process again. This time it was a little over 6 months before the same happened again. I took flecanide as a PIP and it resolved. I had taken some time off for football and it was summer 2021 and around the time of the euros when Christian Eriksen had collapsed playing football. Appreciate that was totally unrelated to my condition but the other half basically told me it wasn’t worth playing football if my heart was under strain. We decided I would give the football up just to see what would happen. As of writing I haven’t had another AF episode since April 2021 (1 year 6 months) which is the longest period since my first AF episode medication free. At the moment I have no other triggers for AF. I drink alcohol, have caffeine and can eat what I want. I now do about 2-3 hours of walking everyday to keep fit. I know that AF is generally progressive and I’m sure it’ll rear it’s head at some point in the future but I’m just enjoying being able to do the things I like whilst I can. I’m fairly confident my football status is officially retired but I still keep my boots 😂. I’m 36 now and just hope to avoid AF again for as long as possible. Hopefully treatments will continue to improve and if I do have a problem in future there will be more options for me. That’s my story in a nutshell.
As it happens at night, does he lie on his left side.? AF, if it’s vagal, can start at
night , if you lie on your left hand side. I’ve stopped lying on that side now. I sleep on my back or right side, I think it’s helped mine. Might be worth trying.
hi jellyfish, medication can sometimes become less effective over time when trying to keep afib at bay? , I know that through personal experience.!
Some people benefit from going a little further and getting referred to a person who specialises in treating arrhythmias, electrophysiologists , I think Iv spelt it correctly.??? or EP for short. and having an ablation if the EP thinks it could be beneficial.
Don’t worry about the future. You will all be ok.
Iv learnt that afib is good at causing worry and fear/ anxiety etc etc. not just for the person who has it but for the nearest to them too.?
It’s still early days and he’s got a lot options left yet to take that will make a big difference.
His life is far from over just because this AFIB has started making an appearance.!!!
I’m 55 now, diagnosed at 45 although I think I had it long before it was caught on the ECG.!
I’m still running around after grandkids, my wife had me walking 4 miles a day on beach on holiday 2 weeks ago in Spain to next town to save on bus fares.!!😡
I still get the occasional flutter but I know it’s not going to kill me. My wife will kill me before my Afib.?
There’s plenty of time for things to be better and settle down.👍
i have had this condition for all of my life and I just turned 73 it first started when i had given birth to my first child back in 1976. Its only recently everyone hair seems to catch on fire over this and want to scare us all to death over having a stroke because of it. I say, watch what you eat and dont eat junk or a lot of food with chemicals. Learn to meditate and stay calm not always easy. But the run around we all get is enough to throw us all in Afib. It’s crazy. I personally think its Covid and the vaccines that are creating more issues for us. Mine got worse after having covid and the pressure to get vaccinated and i say I have natural immunities and Iwon’t get vaccinated because my body cannot handle the chemicals in the vaccine. We are all different. It’s a process
I started with AF about 4 years ago which wasn’t much of a problem to start with but got worse around Oct/Nov. I had been on bisoprolol and increased the dose in Spring 2022. Spoke to my doctor who just wanted to increase the dose of bisoprolol which made me feel more tired. I insisted I saw a cardiologist and put forward the idea of a catheter ablation as my af was paroxysmal. The cardiologist agreed. I had my catheter ablation at Leeds General Infirmary at the beginning of Sept 2022. It was successful and I have been fine since. Have also not touched a drop of alcohol since. It is not worth it. I suggest you fight your own corner to get what you want. I didn’t want to be on medication the rest of my life.
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So afraid
Worried about holiday
Age, cycling (ebikes) and afib.
