Hi all hope everyone is well. Wish I was. Two days ago I was diagnosed with angina in ACU and prescribed yet more medication. The angina I now have is distinct from AFib type of angina pain which I am familiar with ie: I only experience it when I'm in afib. So A fib free, in NSR i have angina pain quite often now, even when resting or relaxing. Exercise is now a thing of the past. I am devastated....treking the sandunes, beachs and woodlands with my dog in hail, storms, thunder or shine was my salvation.How on earth did this happen? Warning, reply to my own question could be quite thought provoking or it could annoy some people. But still, here is my self appointed opinion as to what I think happened here. I suspect Flecainide triggered worse AFib attack ever which resulted in angina that's is not a fib related angina.
Here's the story 4 week ago (ladies day at Aintree racecourse), was admitted to a+e with a fib that went on for 20 hrs. Cardio doctor on call wanted to prescribe Flecainide. Informed her that several cardiologists had told me that I cannot take Flecainide due to a 50/75% blocked artery. Even told here that my cardiologist aimed to test the actual extent of block before prescribing Flecainide. She was very adamant that she had read my medical reports and said I would do well on Flecainide which I agreed to take, hence I was given one dose while in a+e then sent home when a fib stopped. Took it for future two days then AFib hit with a vengeance I have never before experienced. So back to a+e. I was in A fib for 12 hours ok that's not bad, scary part is heart was so very fast, I was in more or less in PEAK cardio mode for 3 an 1/2 hours. For goodness sake I am 71, and by no means a athlete. Good God surly at that rate my heart was damaged even further. Kept in ACU for 4 days and put on Amiodarone which has kept a fib at bay but now got an additional heart problem namely angina which has changed my life more so than afib.
Hence I truly believe that the cardiologist should be held accountable for the action she took. In my case her decision clearly shows that the risks out weighed the benefits.
I am devastated and quite depressed knowing I should have stood my ground and not taken the Flecainide.
What do you guys think?
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DizzyD
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Several issues and all slightly above my pay grade. (1) Flecainide is only supposed to be prescribed if you have a structurally sound heart. That definition may vary from doctor to doctor; (2) My experience with Flecainide was a bumpy ride for the first ten days and then it kicked in and worked, however I did not have issues to the extent you did; (3) Were you prescribed a nodal blocking agent to take alongside Flecainide at home. It might have been bisoprolol, metoprolol or diltiazem? These drugs are prescribed for safety reasons to keep you out of a dangerous flutter, which you my have had in the hospital. Did they tell you how high your rate went? Sounds like you have to find an ep that you trust before continuing with Flecainide.
No Jim I was not prescribed anything apart from Flecainide. No again Jim they did not tell me how high my rate went but I do know from heart monitor screen that it did jump to 220 at times without any activity. Do know from discharge papers that troponin level was 82 and noted as "rate related"!!!
Jim could flutter show up as PEAK CARDIAC ACTIVITY on a device such as my fitbit? Flecainide was stopped now on Amiodarone which is quite scary considering the toxicity of this drug. Oh by the way, blocked artery aside, I do not have a structurally sound heart, LA dilation, mild mitral stenosis with the new addition of angina.
So let's try and summarize. Several cardiologists told you that Flecainide was contraindicated because of blockage. Then they went ahead anyway and gave it to you without a nodal blocker for protection. Then you ended up back in the A&E with arguably a dangerous 1:1 flutter, based on that heart rate, a condition that a nodal blocker can hel p prevent. Moving forward I would listen to a cardiologist or ep you trust.
I just used 1:1 Flutter as what could happen if things go very south. 1:1 Flutter has a very high heart rate, even can be above 250 bpm, so I doubt that's what you had 😀
The main point was to get clear instructions from your doctor when to take Flecainide and when not to. For me, I took it most when in afib, and occasionally if I had a lot of ectopics which tended to precede my afib episodes. I never took it when in aflutter.
I don't know why you wouldn't consider a formal complaint at the very least! I would be,followed by swift legal action.To be blunt you could have died. Flecanide is a black box drug only to be given to patients with sound hearts. This was highlighted in its trials when patients died!
I would indeed look for an Electrophysiologist at the first opportunity.
I blame Flecanide for my cardiac arrest last summer at age 43 so I’m not it’s biggest fan despite knowing a couple of people who swear by it.
I was prescribed it after ablation no 2 and during the week and half I was on it, it sent me into a tailspin with high heart rate so we stopped. I was due to go to a concert in London so thought it was best get it checked out and they told me I couldn’t go to the concert and instead I was having ablation no 3. After the ablation, commenced on Flecanide again and once again it sent my heart rate and AF through the roof. Stopped it again under advice of cardiologist then a month later went to Crete on holiday with my family. 4 days in my heart just stopped beating. My husband gave me CPR and upon admission to hospital my Long QT interval was delayed (a side effect of Flecanide). I was in hospital for 18 days and airlifted to LHCH where I had an ICD fitted. No reason was given but I’m sure it was Flecanide as they have closely monitored me with other meds and found that it delays my Long QT Interval and I’m quickly taken off it. I’m now on Amiodarone until end of this month as I’m not supposed to be on it long term.
I think for most people Flecanide is a great drug but I don’t think it agrees with some people namely you and me!
Its scary stuff for some people BeeBee. After all this is the heart we are talking about. Honestly, I do believe that certain medication, if not suitable for a person can actually create other heart conditions. You were so lucky that your husband was able to perform CPR. If I ever go into cardiac arrest that would be it for me cos I live alone. Anyway I ok for now on Amiodarone but want to get off it asap. I am on Mr Hunter NHS waiting list for mini maze procedure in not to distant future so hopefully that will be the end of the afib. Ps I also live 5 mins from Aintree Racecourse.
No Jeanette it's not at Broadgreen...wish it was. It's at Sheffield Northern Hospital. Mr Stephen Hunter put me on his NHS list. Not sure if LHCH offers this procedure. I did mention that I was looking into mini maze procedure to my cardiologist based at LHCH he never heard of it. In the course of our conversation he actually said, "If this procedure was a success it would be available on the NHS"!!!!! The mind boggles. I have been offered it on NHS. Mr Hunter is a NHS cardiacthorasic surgeon. Hope this helps.
I have been told that Flecainide is dangerous for me but last year my GP consulted a cardiologist on my behalf because I was getting swollen ankles followed by AF in hot weather. A small dose of Flecainide was prescribed but even though I am taking Diltiazem which should protect me from a fast rate I was too scared to take it because I don’t know why Flecainide is dangerous for me. Looking at previous comments I’m glad I hesitated. It was in my drawer ‘just in case’ but maybe now headed to bin!
flecainide is a no no in case of cvd according to EU and American guidelines for Afib. Taking legal action is one of the options and I don’t know the laws in UK but if you have a malpractice lawyer in UK and can afford it then go for it . Or go another route to get her license suspended if you can do it in UK. She is a dangerous provider and should not practice anymore. Afib and CVD are double trouble. Did you have an angiogram and did you have a stent or bypass? Anyway focus on controlling the risks factors common to both conditions. They are both progressive ones and each one promotes the progression of the other one and it is a vicious cycle. Amiodarone gives you some break to focus on the big picture and go from there. To get stent or bypass in UK might take months or years?, who can wait for so long?
My cardiologist prescribed Flecinaide and the minute I started taking it my heart went all crazy with different arrhythmias. When I questioned the doctor she said to give it time. 🤔. Ummm no thanks. So I stopped taking it and switched from cardiologist to EP. He told me to take it as a PIP and it worked fabulous every time. So I couldn’t take Flec daily either. I had a MiniMaze in Houston Texas last year and haven’t had AFib since so I don’t know if the Flec would have eventually stopped working.
We all react differently to medications don't we? Great to hear that you had mini maze procedure. I hope to be getting mini maze done her in UK in not to distant future. I would go to any length to stop a fib permanently...for some reason it was getting so much worse on medications.
yup I agree about getting worse. I started out with episodes every other month and in three years by the time I went to Houston they were coming every 5 days. With the Flec I was able to keep them at 2 hours long but I was headed for permanent AFib fast. I’m so blessed.
I can’t wait for you to have a mini maze there I am so happy that our friends in the UK now seem to have the option. I felt so bad that you didn’t have any options. Keep us posted!
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