Hi all i am quite baffled as to why private cardiologist has referred me to one of his colleagues for ablation. I have been told numerous times, by nhs cardiologists, that ablation will not work to treat my afib. If fact one previous doctor said, "Ablation is out of the question due to extent of enlarged heart"? Granted, the private consultant I saw is an expert in his field, namely mitral valve work etc and keyhole procedures to treat afib, but I get the impression he is sending me down the ablation route because this is general treatment for afib. What's going on here?
Another concern, just as baffling is he would not give me any medication to deal with AFib attacks. Presently, I am not on any medication an AFib attacks are horrendous. I just don't get it? He did say my medication history shows I am sensitive to anti arrhythmia treatment. Really!
Here is the list of meds I have been on: Bisoprolol which I could not tolerate. Verapamil which worked for few months then AFib started and got progressively worse so I was taken off it. Flecainide which nearly killed me after taking just 3 tablets, which I was coerced into taking by a+e cardiologist who refused to acknowledge that two previous cardiologists would not give me Flecainide until extent of a blocked artery was determined. As a consequence of Flecainide disaster was put on Amiodarone after being in hospital for four days. Off the Amiodarone now because it's messed up my thyroid levels.
Ohh regarding Flecainide disaster, it says on my discharge letter that I had a bad reaction to this drug which is a blatant cover up putting the onus on me, when in reality the a+e cardiologist was at fault for not adhering to prescribing protocol. As for Amiodarone thyroid issues Is a side effect....! Perhaps, I should have ignored the side effect and carried on taking the Amiodarone.
Is there such a thing as being sensitive to anti arrhythmia medication? Such a comment puts blame on the individual, it's a cop out when the fact is side effects can affect anyone.
Anyway, private cardiologist also informed me that there was no other anti arrhythmia medication available to me. Honestly, I cannot get my head around all this. I don't know who to believe. I don't know what way to turn when AFib shows up again. Truth be known, I don't want an ablation neither.
Sorry went off on a tangent.
Has anyone ever been told that a ablation will not work for them?
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DizzyD
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After having 3 ablations my cardiologist said some people are helped by them and others not. He told me that I was one of the ones not helped. Saying that I have been better since my 3rd one, or was it changing my diet to a more healthy one?
I don't eat anything that contains artificial additives.
It sounds like you’ve had a lot of mixed messages and a lot of confusion around your way forward from here. That’s the last thing you need when you’re already struggling with health issues.
The best course of action should be a joint decision between yourself and a trusted EP/cardiologist. But until you have clear explanations and choices regarding medications and the benefit or otherwise of ablation you are at the whim of others. It seems odd someone would refer you for an ablation when that isn’t a choice you have made. Unfortunately none of us here are able to offer medical advice, but I agree with Rosy there are other routes with medication besides anti arrhythmics. Being sensitive to a family of drugs usually just means our bodies react strongly to them.
Second opinion definitely required Dizzy. If an NHS cardiologist says no and a private cardiologist says yes, I’d want to be sure I was being referred down the right route for the right reasons. £££. Hope you get some effective meds sorted in the meantime.
“The General Medical Council which regulates doctors states that all doctors must ‘respect the patient’s right to seek a second opinion’.
• A ‘reasonable’ request from a patient for a second opinion should not be refused.”
Are you really surprised that you aren’t prescribed drugs after the history you posted here? I understand that the episodes are distressing but sounds as though the drugs would not help you, they were all a disaster for me.
As to ablations, once you discount drugs the options are - ablation, pace and ablate or mini-maze. You do need to do your homework and ask the right questions.
No-one can say whether or not an ablation would or would not work but the chances of it working for an individual could be assessed - but then if there was only a 20% chance of it working - would you put yourself through that?
Jean’s answer is spot on. Unfortunately no doctor can predict the outcome so it’s try it and see.
Pacemaker helped me hugely but after drugs, 2 ablations and PM - I still have AF.
FWIW - I have mitral and aortic stenosis. I had two ablations - each of them put me back in NSR for about 9 months. When I went back into a-fib after the second ablation my EP gave me a cardioversion and when that didn't work he gave me two options. One was to live in persistent afib, the other was to marinate my heart and body in a concoction of meds and see how that works. He was very relieved and strongly supported me in my choice of living with afib.
I am in a similar situation. Just one ablation, and anti-arrhthmics didn’t help. As part of a study during the ablation, with an MRI before, they were able to say that further ablations would be unlikely to help. (I was only in NSR for two days.) Too much fibrosis apparently, which was a shock as earlier in the year I was still going in and out of AFib.
My choice was rate control, or if I were to have a cardioversion it would mean amiodarone both beforehand and for years afterwards. I asked the EP if he recommended that, and the answer was no. I do need a beta-blocker to stop the HR going too high.
Only other option is pace & ablate if the rate goes out of control. (Mini-maze is not available where I live, and of course I don’t know if that would work with my rather tenacious AFib.)
My wife has been told ablations are not an option as 2 cardioversions have failed to get her back in NSR so ablation are likely to fail. She's in persistent AF on Nebivolol.
Has anyone suggested cardioversion whilst in AF to see if that will bounce you back into NSR.
I had one ablation under nhs for SVT episode about 10 years ago but developed AF in 2020 and was told by electro cardiologist that further ablation would not help me. Not sure if this is because I also have HCM or the fact that the ablation took over an hour and seemed to be quite lengthy/difficult.
AF currently managed by medication- Propranalol and Rivaroxaban
hi dizzy, Iv had 3 ablations but I still get short episodes of afib unfortunately. My quality of life is much better than it was though.! I’d say most treatments for our afib is about quality of life. And As far as I’m aware there is presently no all out cure for afib in vast majority of us.? I may be wrong.??
Mini maze procedure is much more successful for treating AFib. I am on Mr Hunters waiting list in Sheffield to have this procedure done in near future. Initially I was going to pay but Mr Hunter preferred to do it on the NHSHowever, due to my concerns, such a long journey to Sheffield and aftercare post op, I got a private consult with a Dr.....M here in Liverpool who carries out the same procedure as Mr Hunter. I'm prepared to pay. I made it clear to DR...M that I wanted mini maze procedure, showed him info to confirm I had been accepted to have procedure done in Sheffield. Dr....M did not say that I was not suitable for mini-maze procedure but he did send me down the ablation path, referred me to EP to access me for ablation.
There is greater success with mini maze procedure to treat afib.
If I go down ablation path sure I'll need lots of them, it's going to eat up my money then won't have enough left for private mini maze procedure. You can arrange consult with Mr Hunter in Sheffield re: mini maze. Go for it!!
Slidingdoors99 has a dilated heart and was told ablation was not an option but eventually had one at Bart’s - I hope I’ve got that right. So maybe it depends on who you have been referred to.
Thank you Buffafly great to hear someone else has been told that ablation was not an option due to enlarged heart. The person I've been referred to Is a professor so sure he will want do ablation. Thing is I don't want an ablation. Much prefer mini maze procedure which I'm prepared to pay for. Will state my preference to professor when I go see him 14 DecHave a rewarding day
I have had PAF for 22 years, initially I would end up in A&E about every 6-8 weeks and put on Amiodorone infusion until it reverted normally within 48 hours. Two years later it was suggested an ablation was the answer, but the hospital senior Cardiologist said to me this would not be suitable for me as I didn't have persistant or permanent AF. About 4 years later at a private appointment with a Cardiologist he agreed that an ablation was not for me and it carried risks. In the last couple of years my PAF has become a bit more persistant, and several Cardiologists now want me to have one. I don't want one.
HiI'm a bit confused by the senior cardiologist saying an ablation would not work as you were not in persistant or permanent Afib. Usually it is the other way round as the ablation has a better chance of success if you have Paroxysmal Afib. Obviously only you know if you can live in Afib with hopefully a medication that helps you. Is there a reason why you feel an ablation is not for you especially as you don't do well with the medication that you have tried?
After my first ablation my electrophysiologist told me that I probably wouldn't be able to have another but 4 years later I was referred to another electrophysiologist that encouraged me to have another one. It turned out so much worse than the first. I wouldn't even go back to him. My present electrophysiologist says that all he has to offer is an AV node ablation. I don't do well with meds either and I have low blood pressure and a pacemaker. They had to reduce my sotalol due to long QT. I don't even know what to do now!
When I was diagnosed with PAF 5 years ago, the Cardio told me I could not have one because my lungs aren't good enough. I did have a cardioversion and just keep on with a small dose of Biso and Eliquis, I don't really have symptoms. My Asthma and mild COPD is worse. I have asked 3 Cardios about Biso and Asthma and each one has said that the 3rd generation cardio specific BBs do not affect the lungs. Certainly the 1.25 mg I take daily keeps my HR steadily in the 60s. I don't know what to believe !!!
I had awful reactions to most rate control, beta blockers, channel calcium blockers like you - they made me feel worse than the AF. I just took Apixaban. Had 3 Cardioversions which kept me in NSR for 3 out of 4 years. I was about to have my ablation when covid struck. 3 cancellations later and about 2 years I had to be sent to have scans and tests again as they were so old. Unfortunatley found my heart had remodelled itself - despite being in NSR for most of that time up to a few weeks before the tests. so any further CV or ablation was thought to be out of the question. As I had been in NSR for most of this time I decided to consult privately with the professor in charge of the department at the hospital I would have had the ablation at and he concurred that he would not carry out the ablation. So I am intrigued by your story.
It may be worth your getting a second opinion and checking that all these things you have mentioned are actually on your medical history. My prostate cancer was not mentioned on a medical history my surgery gave me 6 months after I had finished all treatment when I went to consult with a cadriologist privately about my recently diagnosed AF as thee wasn't a cardiologist at my hospital and hadn't been for 14 months. My sister has just found out that her disability ( a balance problem caused by antibiotics given to her in hospital) is not on her medical notes since she changed GP - so always worth checking these things.
Hi Dizzy, Yes, I've been told "You're not a candidate for an ablation" (Good--I don't want one), but I think it was because we hadn't yet tried any drug except flecainide PIP. I had a similar issue with flec as yours: they dosed me wrong in the beginning (way too high for 2 days, and I had 5 days of awful side effects). But then I cut down the dose to 150 mg PIP, and it worked like a charm. That was 3 years ago, and I still use 150 mg of flecainide with NO side effects, and it converts me in a few hours. (My mother has been on low-dose amiodarone--100 mg-- for almost 25 yrs & never had another AF episode! so amio is still there as a back-up.) Wishing you good health... Diane
Yes, same as you. There was a note on the copy of my GP’s letter that I was unsuitable for an ablation due to a severely enlarged left atrium. That was about seven years ago. I’m in permanent AF and am on Bisoprolol and Apixaban. I’ve been waiting for over a year for a cardiology appointment due to breathlessness.
Hi I was diagnosed in 2016 with Paroxysmal Atrial Fibrilation and put on Apixaban and over the years various heart meds, Bisoprolol Ramipril Dronedarone for 3 years over COVID. I was also on Citalopram for Fibromyalgia pain.
Bad combination apparently!
I had years of profuse head and face only sweating until I stopped the Citalopram myself then discovered after numerous GP appointments it was a recognised side effect.
I did not feel well over COVID…tired not myself, then one night I forgot to take my pills 2xdaily 12 hours apart.
I woke the next morning with a clear head, no brain fog, had energy and got up feeling great.
I decided to stop all meds.
Felt fine. Saw Consultant’s registrar 9 months later….Heart likely in permanent AF….so put on Amiodarone and Edoxaban.
Hey ho my Thyroid function fell drastically for 9months before seeing the hospital team after a week on 25mg Levothyroxine.
I was not happy with the side effects of taking a heart pill and given another to counteract the harmful effects when it was supposedly helping my heart.
Been on Edoxaban and Verapamil 120mg and Levothyroxine since Jan/Feb.
Since then I have had severe abdominal pain, been to GP’s numerous times, give CoDydramol, CoCodamol, terrible constipation, diarrhoea, pain passing urine, poo, pain moves all around abdomen right back kidney, right groin area, naval pain. Was in A&E on Sunday night they did nothing kept me in given Pain meds and left, discharged in the morning still in pain, saw GP same day.
X-ray results on pelvis slight osteoporosis and narrowed disks done for sciatica and ankle pain.
Given Senna after Laxido gave me sheer agony for 2.5 hours during the night. Doxycycline in case it is a Diverticulitis flare up.
Desired to stop Verapamil and Edoxaban yesterday, taking antibiotic and thyroxine.
Pain much improved overnight.
Anyone else experience acute disabling abdominal pain that no one knows how to treat.
Otherwise feeling ok heart likely in AF do not feel it now. Had a Halter Monitor on last week and heart in AF at A&E so the Verapamil is doing nothing for my heart but giving me pain in my belly.
Hi Ruffi you seem to have had lots of problems with side effects of medications similar to me. Since 2020, after being prescribed bisoprolol and amlodipine my health went downhill...lots of additional symptoms. Stopped meds and felt much better. Then i would take them again and stop them when things got bad again due to the meds. This was a pattern i repeated many time on different meds. Nobody picked up that i was sensitive to most of these meds.2022 Finally, saw a NHS cardiologist who prescibed Verapamil. Day two after starting this drug i ended up in ACU for 4 days with horrendous afib. Nobody, myself included suspected verapamil as being the problem....caused more frequent AFib episodes. Do know i felt much better when i stopped taking it for good.
Honestly, with all the meds i had so many strange ailments symptoms too numerous to mention. I felt like an outcast when i read posts on this forum because lots of ppl were doing well and i was getting sicker.
Prior to Jan 2020 i rarely went to GP. Now the main aspect of my life envolves around getting health care and treatment which i have paid for. What a sad exitence is that?
Advice to you is listen to your body and research the medication. Do what is best for you if you experiece any side effects that trouble you.
At one point i was prescibed nitrates for angina pain and got severe headaches along with other symptoms so stopped taking all medications because i did not know what drug was causing what side effect. Told my GP what i had done. Long story, but i was referred to a neurologist via a+e, who diagnosed neurological disease...hence i cannot take nitrates ever again. Ohh the list goes on and on.
Anyway, i am on waiting list for mini maze procedure in Sheffield with Mr Hunter via NHS to treat AFib. Have you considered going down this path to get afib treatment thats far most successful than an ordinary ablation.
By the way, i am based in Liverpool. Ohh i did have awful stomach symptoms depending on meds i was on at the time which i cannot recall. I would not take lansoprozol off GP because its contraindicted for levothyrozine thyroid med that i have to take. Somewhere amidst the tirade of additional symtoms i tried probiotics and my stomach symptoms improved greatly.
Antibiotics destroy all the good bacteria in your gut so its a good idea to take probiotics to help your gut. Do know my inflammation markers were very high at some point and begged my GP to help find out what was causing this. Of course, she could not help me. After taking the probiotics inflammation markers dropped to normal level and i felt so much better.
Sorry this reply is so long and a bit mixed up..just take from it what you need and leave the rest.
Lol i attended clinic appointment for stent follow up 2 weeks ago while i was in severe afib. Did not get stent follow up...was admitted directly, to ACCU instead. For once cardiologists took some definitive action and contacted Mr Hunter in Sheffield so i have now got telephone consult end of March with him. Hopefully, i might get maze procedure to treat afib sooner rather than later.
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Experience with amiodarone
Has anyone ever passed out?
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Has anyone ever taken edoxaban?
