hi all I'm really worried right now and dont know what to do for the best so just looking for a bit of advice. My recent emergence of afib attacks are very symptomatic and lasts for up to 10 hours....rapid ventricular tachycardia, breathlessness, pain in center of chest. Had very long episode on Monday and having another one today. I was on Amiodarone but i was advised to stop taking it August gone due to side effects. Amiodarone has a very long half life (up to six months) so i suspect i have had some protection even though i stopped taking it in August. I believe these recent attacks could indicate protection is waning because amiodarone has near enough left my body. I was dreading reaching this point.
Thing is after a dreadful proarrhythmic reaction to flecanide, I have been told by several cardiologists that i cannot be prescribed any anti-arrhythmia medication. anymore to treat afib. The thing is I had the bad reaction to Flecainide mainly because it was given me while i had a 75% blocked coronary artery which was bound to trigger an adverse reaction. I now had a stent fitted so blocked artery is sorted. My theory is: Flecainide might work for me this time round because i no longer have a blocked artery. What do you guys think? Hope i'm not grasping at straws here.
I have several other heart issues: enlarged heart, mild mitral stenosis, angina which is questionable, and hypertension. Really worried about these afibs attacks causing more damage to my heart and possibility of going into cardiac arrest.
Would really appreciate some feedback
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DizzyD
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My theory is: Flecainide might work for me this time round because i no longer have a blocked artery. What do you guys think?
Sounds reasonable, but beyond the pay grade here. This would be an excellent question to ask an electrophysiologist (ep) as they are most experienced with afib and anti-arrhythmic drugs versus just a general cardiologist. Meanwhile, hopefully you've been given something to keep your rate down while in afib. Also, have you asked or been offered an ablation?
thanks mjames yes it does sound reasonable. I have seen an EP and he was prepared to do an ablation at a cost of £11,000 which i could not afford. The success rate would have been very low because i have an extensive enlarged heart. He would not prescribe any medication to treat afib based on my past reaction to anti-arrhythmia meds. I have been told that i am too sensitive to these meds. Doctors are failing to address the issue of a blocked artery could have caused the bad reaction to the anti arrhythmia medication. They are sticking with their narrative and putting me in danger by not prescribing any medication.
Nope, i have not been given anything to keep my heart rate down while in afib.
Nope, i have not been given anything to keep my heart rate down while in afib.
You mentioned Verapamil. It is a rate control drug in the calcium channel blocker family. The question is how well is it controlling your rate while in afib. For example, when I went into afib, the calcium channel blocker I took -- Diltiazem -- gradually got my heart rate down to around 100 in 4-6 hours. I don't know the specifics of your episodes, but if your heart rate is staying too high, too long, then you want to report that to your doctor so they can take another look at either the dosage, or perhaps even change, or ad, another rate control drug.
ohh Jim while in hospital, during flecaindie disaster i eventually reverted to NSR naturally. Later, in the day they gave me verapamil, after two doses I reverted back into full blown AFib. Guess what! I have been told that i cannot be prescribed this type of drug neither because I am too sensitive to them. In my opinion this a load of nonsense. I did read somewhere that proarrhythmia reactions can occur if given to a patient with a blocked coronary artery. Need i say more? What a dilemma i am in. My heart rate is staying too high for quite some time....this really troubles me. Thank you Jim
Just chipping in here re Flecainide. If your heart morphology isn't good - which you indicate above - they cannot prescribe Flecainide. I'm not sure why, but I was told that is a factor.
Just a thought - are you a candidate for mitral valve repair? A friend of mine who also had AF had her mitral valve repaired and its made a big difference. She's literally a new woman. It's a big decision though - open heart surgery. Sounds like you need a coordinated approach from.both electrophysiologist and cardiologist to decide which is the priority. BTW my friend no longer gets AF.
Hi - I previously had a heart attack and no damage done luckily, however the EP I had a consultation with told me Flecanide was absolutely not an option for me due to having had a HA (caused by a blocked artery) and went so far as to tell me to make sure if I ever had to attend A&E for my AFib that I tell them not to consider Flecanide - Look I don’t know if the same would apply to you but wanted to share with you in case
Sorry also meant to say - so I had no anti-Arrhythmia meds since diagnosis and had a pretty awful 9 months waiting for an ablation as also very symptomatic and episodes every 2 days - Im 7 weeks post ablation and for last 4 weeks not a sign of AFib (fingers crossed)
While yoo wait for an appintment to see an electrophysiologist (EP) make sure your doctor has you on a rate control drug to keep it at a safe level and of course a suitable anticoagulant to prevent strokes.
Thank you Bob...I am on apixaban and clopidagrol post stent. Is verapamil a rate control medication? If it is they wont prescribe that neither because i had a severe reaction to it and reverted back into AFib after being in NSR for almost a day, post flecainide disaster.
What has happened with Mr Hunter? What did he say?
A friend of mine had mitral valve replacement with him. She's zooming around the place now. She was going to have this done via Keyhole but had had a heart infection the year before and he found scarring was obscuring his view so ended up with open heart surgery. Very well now.
Hi lovely mitral valve issue is mild...they not concerned about it at this point but keep checks on it. Recent, private echo revealed no changes have occurred since last echo. I've been in NSR since 16 Dec. AFib returned with vengeance on Monday....nearly 6 mths off Amiodarone!!! For some reason I am have very weak legs after afib, can barely walk today an wiped out. My RHR gone up too to 72...used to be 62. No idea what that means. Anyway, Mr Hunter advised me to contact him or Michelle if anything changed to bring my next appointment with him forward so will do that today. Suspect afib is on the rampage now. Hope I'm wrong.
Brilliant 70% of the way. So you now been off Amiodarone for nearly 4 months. By six months, you could be on your normal dose. Sincerely hope you get back to your normal dose much sooner than the Amiodarone clear out time of 6 months. Well done lovely. The only way is UPI increased levo by 25mcg alternate days, last week so now I am on dosage I was originally on prior to taking Amiodarone. Just hope this small increase has nothing to do with AFib episodes. Before increase, my thyroid levels were middle of range.
I've done smaller increases so only one quarter of One grain Armour. So T4 9.5mcg and T3 2.5mcg. I get some heart racing for two days or so post increase but Endo said that normal as the effects of Amiodarone kick back. then it settles.I've been warned that the rate curve almost flattens level of Amiodarone leaving your body as time goes on so am expecting the next few increases to be further and further apart. Don't for it only halves after about 140days. So at 6months it hasn't totally left your body. That takes 8-12months approx. Though my Endo says they actually don't really know when it finally is gone as that's an estimate.
Ahhh, you said 'effects of Amiodarone kick back' after an increase an you experienced a racing heart. How long after the increase did racing heart kick in? Just trying to work out if increase, I made last week, could have triggered afib. Hope it did....this suggests aFib could settle down. It's reassuring to know Amiodarone could still be providing some protection, hopefully preventing afib due to half life way beyond 6 months. Phew, you have thrown me a life line. Thank you.In the great scheme of things, don't suppose it matters, I reduced Amiodarone from 200 to 100 dose mid June last year.
Yeah in the early days, I read somewhere that it could take years for Amiodarone to leave the body. Endo also said: Nobody actually knows how long Amiodarone remains in the body. I have been quite delusional, lolling myself into a false sense of optimism expecting iodine content to totally leave body in six months lol.
Am afraid you have, but a large chunk will have...its the DEA that the problem. Kick back- mines usually starts 24hrs after starting approx. Its why I take such tiny increases. My heart races but not all the time.
Can you quarter your tablets?....be better to take a small dose every day then every other day. I cut my tabs in half and then bite a quarter off...can't be exact but keep the other bit for the next day.
I have to say if I had to go back on something like it ever again I'd ask about the equivalent....begins with D. At least that one doesn't affect thyroid.
I think, reading all the heart problems you have, including CAD, that a responsible doctor wouldn’t prescribe a rhythm control medication because I believe they are only suitable for people with healthy hearts. Hopefully they can come up with a rate control drug that is safe and effective for you.
I can’t take any anti-arrhythmic meds either, nor rate control (Verapapril) but drugs are not the only treatments out there so maybe talk to your doctors about alternatives?
I ended up opting for Pace and Ablate - only the Pacemaker in itself kept me in NSR for 98% of the time and when I have the occasional episode I am not really symptomatic as I used to be. Best thing I ever did. I had had 2 ablations prior to PM implant.
See a really good EP and whilst normal ablation may not be an option for you ask about pacemaker.
My B F in Australia had all same history as you. It was too long a wait on their NHS, she had insurance cover from husband so had pacemaker fitted . Has been good ever since .
I have to agree, the only person who really can advise on this and treat is a qualified medic. I had an ablation for mine 8 years ago, told it was 100% successful however it wasn't so for me ablation just wasn't the answer so I had a pacemaker fitted and for those 8 years I could say 'what A/F'. ! However, I still have to take drugs. S0, my advice would be, as the others have said, do some research, find out your options, discuss in length with your medical team and see if collectively you can come up with a plan. It might be an idea to ask for anti coagulation to protect you from a possible stroke due to A/F. Good luck x
Thanks opal for pointing out I would have to take drugs if I had a pacemaker. Apart from anti coagulants, I can't take any other heart meds. Anyway, I don't want a pacemaker fitted at this point...I have been accepted for mini maze procedure in Sheffield. Post procedure I will be prescribed heart meds for a period of time, which I am willing to accept.
I don’t take any meds apart from anticoagulants, you don’t need to take drugs with a pacemaker - but depends upon the pacemaker and what is programmed to do.
OK like me I'm not allowed an anti-arrhymnic meds, ablations or cardioversions.
It seems you were not checked for any structural heart abnormalities.
You should never had flecainide.
I was finally controlled after being left on a BB first metopolol and the special at last changed me to Bisoprolol but both left me with a high Day H/Rate.
My Locum suggested this brilliant Heart Specialist who was doing more private work. He introduced CCB Diltiazem. Wow, within 2 hours my h/rate went from 156 to 51! We tweaked the dose down to 120mg AM, reduced Bisoprolol 2.5 PM (must be separated) to arrive at a 86-96 H/Rate but a year later reduced weight by 6kg Day rate is 60s and I feel much improved.
Hopefully Bisoprolol will reduce the dilation of my Left Atrium which causes R.Ventricle regurglation. Locum who has had AF says but young Cardiologist says no it won't. I remain hopeful.
Rhythm is helped by reducing H/Rate.
So no anti-rhythmic meds. They are very risky and dangerous meds.
Yes I was checked for structural heart damage prior to being prescribed anti-arrhythmia meds and rate control ones. All cardiologists I saw knew about the structure damage. I got diagnosed with all heart problems 2020 (during lockdown) via a private cardiologist. I trusted them because I believed they were the experts. From the very onset of taking any of the meds prescribed AFib events became more frequent, more severe. All along I suspected meds were making things worse but docs took no notice.
Thank you for sharing your post with the Members of the Forum. With such a variety of complex conditions, I would suggest speaking with your doctor(s) for advice on the best form of treatment going forward, they have access to your medical records and only they have the knowledge and expertise to assess and decide the best treatment for you on a personal basis.
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Like you, I have been told that I cannot take flecainide and sotalol, and that amiodarone was the one I would need. In my case, my heart is sound structurally, but I have some timing issues and a normal but low-ish EF, which I suppose makes any potentially pro-arrhythmic drug unsafe.
Luckily, my main symptom is palpitations with only occasional AF. I asked the cardiologist (who is also an EP) whom I saw what would happen if the AF became worse and he just said, "ablation" with he eventual potential need for a pacemaker. I was prescribed losartan daily as he said it was a "cardio-protective" in the long term, even though my BP is normal. Since then, my GP has given me bisoprolol daily (1.25mg) to keep the AF at bay, which, so far, it is doing well.
Like you, I worry about the future. I think the AF itself won't cause heart damage, though. The bottom of the heart is safe from what is happening "upstairs", I gather. The need is to control persistent tachycardia, hence the beta-blocker. My problem is that my resting rate is quite low, too, so taking a high dose of bisoprolol is likely not a good idea, hence the potential for a pacemaker.
It's all a bit of a devil! You need a good chat with your doctor, I'd say, cardio or EP - both are equally expert in the UK at any rate.
They wouldn't give me Flec because I'd had a very small amount of scarring indicating a silent heart attack, perhaps many years before, so not surprised they're reluctant with all the other stuff you've got there. As far as the fact yours is so symptomatic (mine was too) I don't think they worry about heart attacks (even though we do), but possible you might go into heart failure mode. My mate's mum has had heart failure for about 10 years, so it's not as scary as it sounds. I was in it too but's it's now gone. Talking of which, you haven't mentioned an ablation or cardioversion. Have they been considered? What about Sotalol? I take it they're now concentrating on controlling the rate and not so concerned about the rhythm, even though it's the latter which cause many of us sufferers the most consternation.
Hi Cabinessence (love the name by the way 😊) Dizzy is down for an ablation with Mr Hunter. That's what she's waiting for. 😊 She's seen quite a few heart specialists and sometimes, of course, you get conflicting advice which is confusing... Lol..
Hey thanks waveylines. Hope all is well with you! Hope Cabinessence doesn't think ablation, I am waiting for with Mr Hunter, is the same as regular ablations offered via NHS. Off the email Mr Hunter and Michelle now. Have a rewarding day lovely.
😂🤣 True...Dizzy. The minimaze is an ablation to the exterior of the heart so can get to spots that a catheter ablation can't..... Words of my EP who recommended the minimaze with Mr Hunter.Thank you.... Yes doing OK.. 😊
Thanks Cabinessence, I was booked to have an ablation 6 January 24 via a private EP but I cancelled it. Prior to seeing him every cardiologist I saw told me ablation would not work for me due to the extent of enlarged heart. Let's not forget, I would not have been given any arrhythmia meds or rate control ones post ablation. As far as I'm concerned I could have wasted £11, 000.
The BB's used in cases of AF are to control the heart rate by restricting the amount of adrenaline released by the adrenal gland. It's this hormone that tells the heart to beat faster when we're frightened or aroused. It's sometimes called the fright or flight hormone.
"Beta blockers are medicines that lower blood pressure. They also may be called beta-adrenergic blocking agents. The medicines block the effects of the hormone epinephrine, also known as adrenaline. Beta blockers cause the heart to beat more slowly and with less force."
BBs do little to control my heart rate. I was put on Metoprolol after the stroke with AF. Then left at 185bpm Day. (47avg Night) both highlighted my 24-hr heart monitor. Also pauses at night on it.
Changed to Bisoprolol and brought down H/R Day to 156 and left.
BP controlled on as little as 2.5mg Bisoprolol.
Adrenaline was not the problem with me and 2.5mg Bisoprolol which did not make me breathless as Metoprolol did, and ACE inhibitors.
High Heart Rate needed controlling was more important in my case and CCB Calcium Channel Blocker Diltiazem proved its worth. 1/2 dose took my heart rate down to 51 within 2 hours.
Everyone is different.
I'm not anxious as I believe I am lucky as putting me in hospital discovered my thyroid cancer by a carotid scan. These arteries were squeaky clean.
Yes, a stroke but now 4.5 years down the track, apart from still a little dropped month I am almost A1 again.
CCB Diltiazem 120mg AM keeps my night heart rate at 47bpm.
Never ceases to amaze me how different folk react differently to meds. Biso didn't touch my BP and left me wheezing after one flight of stairs. Keep taking the tablets Joy. God bless.
sorry to hear this. Can you get advice if it’s safe to take magnesium ? Google and research , ask google if contraindicated with your meds. Keep looking for a Cardiologist who will stick with you . It is possible after having a procedure m ds will work differently . Drs don’t know how very individuals reaction . My G P is always interested in my u usual reactions to things. Hope you will find the good solution 🙏🏻🙏🏻🙏🏻🙏🏻
Try to be as calm and positive as you can. I know that uncertainty is draining and the threat of heart instability is difficult to contend with. You need intensive diagnostic help and a carefully thought-out plan of treatment to not only deal with the complicated issues, but also to give you some peace of mind and relief from anxiety. We are certainly not qualified to recommend medical practices, but can only encourage you to insist that doctors address the whole picture with your interactive heart issues.
In the US there is an unfortunate division of expertise and focus between the cardiologists and the EPs. You may have to be very proactive in insisting that they work together and find answers across their disciplines, rather than shunting (no pun) you back and forth.
All you can do is try to stay strong and find ways to relieve the stress and anxiety.
I wish you well with that and with finding better treatment options.
I am unsure (no medical advice here) but I don't think you can take anti arrythmics with a heart that is not structurally sound. Ask your EP. I couldn't take flecainide because it caused problems arrythmia in me but I can take Sotalol
From day one of my AFib journey October 2020 every cardiologist I have seen since then, knew that I had structural heart damage yet they prescribed a variety anti arrhythmics or rate control medication which in my opinion, caused more frequent, worse AFib attacks. Listening, to my instincts, at times, I would stop taking the meds without any professional advice only to be reprimanded by docs for stopping the meds, so I would take them again which led to further deterioration to my heart over time. I was labelled as a difficult patient who is "suspicious" of medication!!! Knowing what I know now, I had every reason to be suspicious.Then came the Flecainide disaster (was coerced into taking this drug) whereby I had severe proarrhythmia reaction due to the fact that I had 75% blocked coronary artery in additional to other structural heart damage.
After Flecainide fiasco I have been recently told by private cardiologist and private EP that I cannot be prescribed any anti arrhythmia or rate control medication at all because I am SENSITIVE TO THESE meds. In my opinion I was not sensitive too these meds...I had very bad reaction to meds because they were prescribed while I had a blocked coronary artery and other structural heart damage.
So yes you are correct one needs to have structurally healthy heart prior to being prescribed these drugs.
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