Does anybody on here have experience or encouraging stories about Atrial Fibrillation especially the aggressive kind. I'm 43 and diagnosed with AF in March '21. I've had a cardioversion, 2 ablations in the upper chamber and 1 ablation in a lower chamber. The last ablation was in June then in July, I had a cardiac arrest in Crete (apparently unrelated to AF). I now have an ICD fitted but AF is debilitating me. About 6 weeks ago, I was put on a medicine called Quinidine which worked amazingly well but upon closer monitoring, the hospital realised the medicine was increasing my Long QT interval which puts at risk of another cardiac arrest episode. They halved my dosage 2 weeks ago but slowly and surely, the AF is back with a vengeance.I used to be really active, a runner with a busy family and social life but now I can't plan for anything or even exercise like I used to. I'm hoping to hear a positive story to give me some hope!Thanks
”Aggressive” AF: Does anybody on here... - Atrial Fibrillati...
”Aggressive” AF
I had a cardiac arrest in Crete (apparently unrelated to AF)
When you say AF is "back with a vengenance", did the doctors think Quinidine would control the AF. Would be good to discuss with them your AF symptoms.
The positive is you are young (43) and may be eligible for procedures to control the AF like the minimaze. However, your cardiac failure issues may complicate treatment.
I would encourage you to seek counsel from trusted medical professionals. If MummyLuv sees this thread, she may provide info on how to contact the best professionals in the UK.
Easier said than done, but keep your spirit high. Also, a former runner I know the disappointment in not being able to run but walking at a moderate pace is a good alternative.
Thank you for replying. Yes, the Quinidine was prescribed to control the AF but they were nervous to give it to me as when I tried Flecanide, it made my AF worse plus could have been a possible contributing factor to my cardiac arrest.
I just feel really flat - I have family visiting this week and I feel too exhausted to deal with it all. It was also a reminder that on their visit last year, I felt the same way and nothing has changed.
I do walk the dog for an hour every day but running kept me sane (and slim). If somebody says to me that this is it now…this is your new normal, I could change and adapt. I’ve had nothing but what feels like false promises and nobody is telling me to change my hopes to more realistic ones.
Sorry to rant - this has been a tough week 😵💫😵💫
You are in a limbo at present, that's one reason why you feel so down. Perfectly understandable. Stay on your case - keep asking questions as to what is going on - why you're being offered particular medication or procedures. I haven't checked if you're UK based. It sounds a bit like your on the receiving end of a 'firefighting approach' in terms of treatment - without a clear plan. Have you been seen by the best people do you think? Is there anything you can do about that?
While you're looking for the answers you need start a self care regime of improving your dietary intake, to help with any weight issues, cholesterol and blood sugar etc, check your sleep patterns and adjust your exercise regime as suggested. These lifestyle things can't cure us necessarily but they assist in our progress, and also contribute significantly to a sense of well-being.
Hope this helps!
I am sorry you were going through so much. It sounds like me after my last procedure which was an aggressive I’m not sure if you would just call it an ablation because it was the Vein of Marshall using alcohol instead of RF or cryo- and in several areas including behind the heart which is usually not paid attention to. Unfortunately it took care of only my floater and yes My af came back worse than ever. I went on like that for over five months. Only when I finally woke up and realized I had a lousy doctor and made it a new one because the other ignored me, that is when I started to get help. I know it is different in the UK unfortunately but here I could find another doctor and within 5 days he did an echo and a cardio version and for almost a month I felt amazing. It also turned out my medication the other doctor had me on does nothing when not in sinus rhythm so it is like a sugar pill useless. My cardioversion failed over the weekend. I am off the medication again because again it is useless and he believes less is more. I am also on a higher rate of metropolol XR and have an appointment with my EAP regarding another ablation on the seventh for the appointment. Don’t give up hope. I had a cryo-and when that failed they did an RF six months later. That lasted a year and a half and I felt good. We just have to remember for some of us none of these are permanent so we may need another. There is no cure you need to keep remembering that even though it’s discouraging the break that we get when they can fix it is life-changing as you know. I have no question about having another procedure I want quality of life and when a fib is acting up we don’t have one. When I get it it is continuous and right now I am miserable because there are so many things I want to do just like you and I can’t. I have many years on you but age has never stopped me until a fib
Thank you Dawn. It’s reassuring to hear you’ve experienced long periods of time free of AF but disappointing to hear of its return.
My doctor does specialise in AF and he tells me that he constantly reviews my notes with other doctors and one in particular who is quite esteemed. He calls my AF mischievous and he does seem really committed to getting my quality of life back. They’re monitoring me through my device to try to identify where it is all originating from and even suspected a link to hormones at one point. I’ve had every test under the sun and they can’t find a cause.
Hopefully, the monitoring through the ICD will bring something to light and I can get fixed once and for all.
I guess we’re all in this together 🥹❤️
We are absolutely all in it together. Unfortunately there are still more questions than there are answers. My previous ablations are still holding strong I don’t know what happened with my last surgery with the Vein of Marshall. The clutter was taken care of although I never would’ve known it because I felt so high right right up until my cardioversion. One thing I have noticed now that I know it is flutter I am experiencing is that it is not as painful is a fib itself. It appears the cardioversion still is keeping the afib at bay. My doctor tells me flutter is easier to fix so hopefully I will find out very soon. My previous doctor is actually world renowned. That being said, it’s too bad he’s a jerk. He let me down and abandoned me in fact I recently discovered he has not even set my referral to the other EP. He behaves as though I do not exist any longer. I think we have a field at a good time if you are going to have it. I am noticing quite the interest in it with the doctors. They love a good puzzle I guess and this one is a doozy.
I am counting the days until I meet the new EP. Thanksgiving at Cetera has thrown peoples schedules off or I probably would be with him by now. Best of luck just remember you are absolutely right we are in it together
Hi
Oh dear you have been through it!
I would have called my AF and rapid persistent H.R Avge Day aggressive.
Why because I had a high H/R day on the 24 monitor of 186 Uncontrolled on Metroprolol. Changed to Bisoprolol another 18 months later only put me at a reduction to 156 Day. I always stay at 47 at Night.
Always had low H/R at night with shoulders that needed covering at Night!!!??
Rapid and persistent gave me symptoms of excessive sweating and fatigue. Stopping whilst walking on flat etc. Couldn't exert myself without within minutes lying down and sleeping.
But I have had no cardiac conversion and asking about Ablation is a No Go as 1 chamber is enlarged.
It began earlier to stroke of high Systolic level of 150.
People said you wo'thave a stroke with that that!
Well I did and found with AF. But within 4 days of the hospital stay the shadow on my thyroid via seen on a Carotid Aereries Scan thyroid cancer.
In the final push to get me satisfied that I had H/R Day controlled I went to a private cardiac specialist who was interested started me on CCB Diltiazem a calcium channel blocker.
With some tweeting of meds I. am much improved and controlled on
Diltiazem 120mg am and Bisoprolol 1.25mg pm.
Vitals. BP 123/70. 77-88 H/R Day at rest. 47 H/R at night.
I had 3 24-hr monitoring last year showing up each med/or at the last one December 2021 Diltiazem and Bisoprolol blend.
As I understand cardio conversion is a temporary fix.
And Ablation sap bits of your heart. My friend who has had 3 ablations has been told no more.
Another friend was on 4 different drugs. His first demonstrated 2 separate AF responses and he has been fixed with no more events. No more drugs and he had had the events over many years.
It appears solving the events of AF is a personal one.
A Heart Arrest is real serious.
All the best....
cheri. JOY. 73. (NZ)
It has been known for Thyroids causing AF to resolve itself. I am w a i t i n g!
You have been through a lot also. I'm glad to hear it's more controlled now 
hello, sorry to hear how much this is affecting you. Given your ablations have not held it may be worth researching mini maze, if you are in England you can ask for a referral to Mr Hunter in Sheffield. Have a read of my posts.
Hi BeeBee79. Unfortunately I can't provide an answer or solutions but I can totally empathise with you. I'm on Quinidine too, have been for 5 yrs now. After my SCA I was fine apart from the aching chest from the cpr that saved my life. I was back in hospital with a dvt in my arm a week after having my icd fitted but still felt ok then a week or so later, back on the dancefloor and living life again! Then they put me on Bisoprolol and it soon ended. I felt so drugged and slow, on just 2.5mg. I gave it months but was waiting to come off them to return to normal again but no follow up so I weaned myself off them and started living a slightly slower life, got rid of the brain fog and lead overcoat, not realising I wasnt supposed to! I thought I'll discuss it with my cardiologist when I see her but months went by until my gp said I must take the meds and referred me back to cardiology. I then had to go back on them and double the dosage too but I spent most days in bed in a haze, months I cant remember anything about. I had several icd shocks too during that time so they wanted me to increase to 10mg in stages but Id already piled on stones in weight through the inactivity and couldnt face any more. So we tried various beta blockers to no avail, still getting shocks and awful allergic reactions to Sotalol that caused dizziness and blurred vision (on day 3 I fell down the stairs and broke my foot) Back on Bisoprolol and the same old awful 'existence' and more icd shocks. While in hospital again an electro cardiologist said forget what theyve prescribed, try Quinidine. It was an amazing improvement. I finally felt I'd got a chance of living again, after 3 yrs of existing in a body that couldn't move. I had 2 shocks in the first few months due to having sepsis but then it all settled down and I had my first shock free year. I had another shock then in the heat following a very stressful period then it settled again but I just felt so tired a lot of the time. They'd found I was having bad episodes of AFs and VFs every week so added a calcium channel blocker alongside but had an awful reaction to that making me so ill and it was stopped. My Quinidine was increased instead but now I get so drained with exhaustion, I've piled on so much more weight no matter how hard I try not to and just cannot see my consultant. In my one call I asked my consultant about the constant upset tums the extra Quinidine causes and expressed my concerns about my weight gain due to no energy to exercise. Her solution? She advised me to try to lose weight and get meds to cure the side effects of the increased meds! Thats it. One telephone appt in 8 yrs is not enough!
Referrals result in letters to my gp, nothing else. Ive just had an icd shock after 20 months of being clear and having applied to renew my driving licence Im so disappointed. I hate being so drained all the time. I start the day full of plans and barely an hour after getting active Im exhausted.
Sorry to whinge but I totally sympathise with your loss of energy to do the things you used to do. I accept life may be a bit slower but not to this level. I've changed to a much healthier diet, tried all sorts but keep putting on weight on 1000 cals per day and now trying a days fasting per week too, which isn't helping at all. This change from always eating loads and staying slim has been devastating.
I sometimes wonder if we took no meds would we be back to bearable fitness levels without any icd shocks for pushing ourselves? It seems strange that I never got any shocks when off all meds! The last cardiologist in hospital said we wont know unless we try going without the meds but they can't recommend that. I get far more AFs now but not usually any shocks so its an improvement.
We just need to break the circle of energy & exercise v meds and cardiac issues. I was fine when starting on Quinidine but it seems a losing battle now to fight everything that slows us down.
I hope you find a solution. Do you get check ups with your cardiologist or is it normal to have to rely on google these days to cure ourselves? I wonder if asking for a referral to another cardiologist would provide any better support? Quinidine does seem better than a meds I've tried so far but I never thought Id be slowed down this much, ever.
Hi there,
I’m so sorry you are going through similar to me although yours sounds so much more serious. Since my post, I’ve had a 4th ablation and I’m now on Amiodarone - it’s meant to be the king of all the arrhythmia meds BUT younger patients like me can’t stay on them for long because of the side effects (liver damage, pulmonary fibrosis to name a couple).
I was on 7.5mg of Bisoprolol in morning and 7.5mg in the evening and I couldn’t get up the stairs. My fatigue levels are worse than when I originally posted! They have literally JUST changed me over to Nebivolol - due to start taking tomorrow to replace Bisoprolol and I’m hoping the fatigue will be gone
I’ve put more weight on since my original post too as my movement is less and less each week. I cannot believe how inactive these drugs are making me and bad I feel compared to running 5 times a week before diagnosis then getting worse with the so-called cures!
I’m so sorry to hear that you don’t have much in the way of cardiology support. That is something I really can’t complain about as mine have been amazing.
I wish you all the best and if I come across a miracle drug that eliminates the fatigue, I’ll be sure to share ❤️
Hi BeeBee79. How are you getting on with the Amiodarone? Much better I hope? I finally got a face to face appointment with my cardiologist at last! First time in 8 years, just one short phone call inbetween.
She seems to think we've exhausted most meds and I agree that more trial and error trying another blocker isnt likely to be much good given my reactions to all previous meds. So she offered me an op to extract the lead from the pacemaker part of my defibrillator and replace it with a 2 lead pacemaker alongside my defibrillator. I had to say yes or no on the spot! So it was a yes but not yet. .
I've just posted the question on HU to see if I can get any advice on it all. I keep thinking that one day soon Ill find a good natural cure bug thats wishful thinking!
I hope you are coping well with your new meda. I doubt we'll be running marathons but it would be great to get some energy back before too long!
Hi there,
Funnily enough I had my post-ablation 3 month check just yesterday. Being on Amiodarone has really helped me but the change of beta blockers has been a game-changer. I have about 80% more energy and for the last 4 weeks, I have been exercising 6 days a week. One thing I will say is that I have dramatically cut calories alongside the exercise and I have lose a pound or an inch. Usually after this amount of time plus exercise, I would have easily dropped a stone by now, I'm not sure if it's the meds.....
My cardiologist said that they didn't want to rock the boat by stopping the Amiodarone cold turkey so I'm to take it every other day for a month. I told him I had been AF free (or at least symptom-free) for 4 weeks - my son said yesterday that it's been like having his old mum back 
We are wondering if the ablation was a success BUT last night, I got a heavy bout of AF lasting about half an hour. Gutted! He also mentioned what's next if after the Amiodarone leaves my body and my AF returns. He said I'm eligible for a mini-maze procedure which is not something I want to do but I feel it's my only option at my age to be able to live a full life.
I find it really shocking the lack of contact you have had with your cardiologist. Would you possibly ask to be referred to another? The standard of care seems way under par and I know the NHS are struggling but this is really poor.
I'll look for your post now and see what advice people give. Sending you a big hug!
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