I met with an EP in South Birmingham today (NHS) referred by my private cardiologist. He was extremely curt, didn’t listen and delighted in telling me that PAF would invariably turn into permanent afib and ablation was my only choice but it probably wouldn’t work first time and came with all sorts of risks and complications! I didn’t feel comfortable in trusting him with my heart to be honest, very dismissive of afib and it’s links to digestion and the vagal nerve and insisted I need to double up my Flecainide and take a beta blocker despite my private cardiologist taking me off of the beta blocker as it’s well documented that it can do more harm than good with vagal afib? I’m at a loss what to do now other than seek another EP who will actually rule out anything else and actually listen to me rather than just talk at me! Personally I do question taking my current 50mg of Flecainide cut into and taken once in the morning and once in the evening as my Afib just breaks on through every other night and simply makes no difference? If I take 50 to 100mg when in afib, then it does terminate my episodes but more often than not I can self terminate by exercise or valsal manoeuvres without needing any pills. He implied that the best outcome was to let it develop into permanent afib and then take a beta blocker or chance a risky non conclusive ablation procedure! I feel like I’m between a rock and a hard place now? Do I up my dose to 100mg of Flecainide a day along with 1.25mg of Bisoprolol, go for a risky ablation or simply do nothing? Personally right now I’m inclined to just keep on my Warfarin which I’ve been on for seven years anyway after a couple of unprovoked DVT’s and a bilateral pulmonary embolism and a subsequent diagnosis of Factor V Lieden and just keep the Flecainide as a pill in pocket whilst endeavouring to make even more lifestyle changes in a bid to keep the angry Morris men from dancing in my chest most nights! Either way I’m definitely getting a second opinion and am considering paying for an appoint with Sanjay Gupta of York Hospital, for no other reason than he seems a patient, approachable man with time to listen and advice accordingly. Thoughts please?
Feeling pressured into ablation! - Atrial Fibrillati...
Feeling pressured into ablation!
Hi Motov
I agree with all that you've suggested, not that you can go by anything I've said. If you live within a fairly reasonable drive of York then Sanjay Gupta would be a good idea. I'd try and get copies of any ECG's that you've had, so that he can see them. Don't forget that he does telephone consultations too, but I expect he would want evidence of what your heart is doing before making a judgement.
Your EP sounds a horrid and uncaring man. He'd soon change his mind if he had AF! I wonder how long it would take if the NHS (your GP) referred you to see Sanjay Gupta?
It sounds as though you're doing well by being able to reverse your AF back into sinus rhythm. Look at me I've had 3 ablations, but still have AF.
Let us know how you get on please.
Jean
Thank you for your kind words of encouragement! I live in Gloucestershire but have just emailed Sanjay Gupta’s secretary and I’m quite prepared to pay the £200 or so for whatever kind of appointment I get! Yes, my NHS EP was a horrible arrogant man who just painted the cup de sac of doom and gloom, it really has spoilt my day! Meanwhile I have to decide what to do medication wise? Flecainide at the current dose does absolutely zip and whilst I can virtually self convert one way or the other, believe me exercising at 3.00AM just leaves me absolutely drained and exhausted! I can’t tell you how good it feels on those oh so rare occasions when I sleep right through the night!
Ouch Motov. What to say about this one ?
A rock and a hard place indeed. There's nothing worse than a curt consulant- they can be right up their own back side - they get it back from me. In fact I quite like them because I don't care less what they think and I'll get stuck in to them. When you see a doctor you are always on edge. The last one I saw in A&E (cardio) was bit like that. Don't worry what they think. S@d 'em.
I can't give you medical advice. However it won't hurt to get a second opinion. Maybe your EP was correct - maybe not. It doesn't harm though to check with another.
Paul
PS can you PM with his name - I might avoid him should it come down to it !
Hi please could you PM me the name also to avoid.Iagree with Jean very difficult to know what to do for the best and if these doctors had it they would feel different im sure too. Could i ask what excdrcise you do to self terminate an episode.
If you do speak to Dr gupta please could you let us know what he says if you dont mind.
All the best to you hope you get some answers and a way forward soon xx
I had a similar EP experience and was offered an ablation. Prior to that I had one cardio who I didn't enjoy good communication with and settled with the NHS one who saw me in hospital and I continued to see him privately for 7 years. I would suggest you seek medical confirmation to continue lifestyle changes and up the Flecainide to 200mgs (no Biso), as the most important is to stop the episodes; this worked for me. I also decided to have a second opinion with Sanjay Gupta but was rather underwhelmed; if you do go for it do remember it is difficult for him to be conclusive in just one consultation and you will have to produce a full history.
All I would add is; definitely see another consultant. No one deserves to be treated like you have been. AF can be so frightening and confusing. We need good, sound, professional advice coupled with compassionate care. You deserve this - don’t except anything less. Let us know how you get on. Clearer solutions and help are out there.
Hi MotovSorry to hear your tail , there are consultants with good bedside manners, and you can check out reviews so if you don’t see eye to eye then look for another.
Very interested to understand your exercise that works to stop your episodes, is there any way to explain or link to website, or YouTube?
Wish you well.
Regarding exercise to terminate AF, anything that raises my heart rate higher than it is during an episode of AF seem to work for me. That can be anything from jogging on the spot or running up and down the stairs! Not an ideal option at 3.00AM in the morning but it’s worked for me, not always but many, many times!
Many thanks Motov. I will be giving that a try.
Worked for me again last night and again this morning but I also added dunking my head into a sink full of cold water, not ideal at 2.00AM in the morning but worked! Good luck!
Hi MotovWow that does extreme, but if it works then great. What’s your normal HR and what do you get to with your exercises and for how long before your back to SR?
Re your consultant I can recommend one with a good bedside manner in Herts/London. If you need PM me and I will give you his details.
Thanks for sharing all your experience.👍
Resting HR is anywhere from 48 to 58BPM. When in afib it’s often a regular rate maybe 80 to 100? Very rarely higher but not often. When I exercise it’ll get up to 130 and can convert in as little as ten minutes or an hour tops. The current dose of Flecainide I take makes no difference to afib breaking through but if I get stuck, 50 to a 100mg of Flecainide as a pill in pocket usually does the trick!
According to the university of Michigan Health Centre, the success rate of ablation for those with permanent AF is only 50%, and of these some will develop atrial flutter which will require further treatment. Additional ablations raise the 'success' level by another 30% or so but that is not to say that permanent AF will not return, even if you don't mind the risks of what is a relatively serious intervention that is irreversible.
I am in a similar situation having ablation being offered as the 'best solution' even though I have been in permanent AF for two years (possibly far longer) and after a stroke. According to cardiologists like Dr Sanjay Gupta on line, being 'cured' of AF doesn't appear to mean you lessen your chance of further strokes or heart problems, as it possibly just disguises the symptoms that result from a possibly weakened atrium or atrial myocardia.
My cardiologist has just suggested Nebivolol, a cardiac specific beta blocker, to replace my long term sotalol use (which is potentially also pro-arrythmic!) but I have yet to try it. You may well decide that using something like this, that will leave you in permanent AF but under rate control, might well be your 'best worst' option, like me. I am certainly not going to undertake the potential risks of ablation for what is probably a very uncertain outcome.
You have certainly not been lucky with the attitude of your EP and that is really sad.The best thing to do with this is to try ( really hard) to pick the messages out from the (awful) way they have been delivered.
It is fair to say that afib tends to get “ worse” as time moves on, your really good work to address the effect on your life should have been respected snd also passed on by your EP but they were not
The way that you were communicated risk seems dreadfully blunt and off putting, but rules on doctors means they have to say them, only your doc did that dreadfully.
Ablation for me needed two goes and after the second afib is not been part of my life. I only take apixoban as a safeguard.
So it way take more than one go.
There are risks with any procedure but they really are rare, and without action there is 100% you will keep afib.
My advice , plan to have an ablation, but seek a second opinion , dr Ben Brown the EP who did my procedures is based in s Manchester and for me was informative , attentive and a great doctor
Steve
Hi Steve, How long have you been afib free since your second ablation if you don’t mind me asking?
Of course I don’t mind 😀I had ablation 2 on the 18 of November 2020 and have been in sinus since then and no rate or rhythm drugs since the day of the op. I’m 61 and walk and cycle more than ever before, I also drink wine with my meals when I want and when I wish can eat my super trigger of red meat. My QOL is soooo much better. My one issue is I do get ectopic beats especially if nervous ( before flying) but they are nothing in the great scheme of things
S
Thanks for swift reply. I am waiting for second ablation as the afib came back as soon as I stopped meds from the first one. Just hoping it is going to be worthwhile having a second one, which is RF as opposed to cryoablation the first one. I am so happy your life has returned to normal 😁
I’ m starting to believe that rf is the better technique with the “ mapping” that is now available .. good luck with number 2
Thank you ! And thanks for the great positive post.
RF?
Radio frequency =RF as opposed to cryo. my (Amateur) understanding is the cryo balloon is brilliant if the AF signals come from the coronary arteries creating a circle of tissue that prevents the AF initialing signal moving across the heart. but if there are other places on the heart that are causing the problem too then with good mapping RF catheters "zap" them individually and there is a better result. Apologies for my interpretation to all and any who understand this fully 
S
Sorry about your experience and I like your idea about getting a second opinion. You should not be bullied into anything and find a doctor with whom you can have a two way discussion, not just one way. Can't really comment on whether or not to get an ablation as that can be both a complicated a personal decision.
That said, increasing your dose of flecainide does make sense given the frequency of your episodes. Assuming it's not medically contraindicated and tolerated. 25mg twice a day is not very much flecainide and as you point out that dose isn't working.
As you may know, flecainide is only recommended for structurally sound hearts and therefore some sort of testing, such as an exercise stress test, is usually required prior to it being administered.
So assuming your heart is structurally sound, the starting dose is usually 50 or 100mg taken twice a day. In my case I started with 50mg twice a day and now am taking 50mg in the morning and 100mg in the evening, as almost all of my episodes are at night. The plan is to up it to 100mg twice a day if that doesn't work. The dose can be increased even more as long as it's tolerated and monitored.
Monitoring usually consists of a 12-lead ecg taken at baseline, then one week after you start and then after every dose increase. Among other things they are looking at an abnormal increase in your QT interval. It that happens they will either decrease the flecainide dose or take you off of it.
The other thing is that flecainde should be taken with an AV nodal blocker for safety reasons so you don't go into 1:1 flutter. That's probably why the ep said take it with Bisoprolol, which is sound advice. Alternatively, you could take it with a calcium channel blocker like Diltiazem as a nodal blocker. That's what I do, as I don't tolerate beta blockers very well.
Personally, I'd choose whichever nodal blocker you tolerate better and at this point not get hung up whether beta blockers are good for vagal afib or not. I don't think it's as cut and dry as sometimes made out to be.
Not a doctor and these are just my personal opinions based on what I've read and how I am treating based on advice from my ep. Your situation may be different, of course. Good luckwith your second opinion.
Jim
I’m inclined to agree with your reply and I definitely will be seeking a second opinion. Regarding Flecainide, I also agree the dose I am currently on is very low and whilst I did not have a stress test I did have an echocardiogram to check my heart was structurally strong, which it is. When I was first diagnosed I was sent away on daily 1.25mg of Bisoprolol and it obviously didn’t stop the episodes just lowered my heart rate. The major difference now being on just Flecainide is the episodes are for shorter lasting and more intense where as before they lasted longer, often days before they self converted to NSR but I did tolerate them. I believe the Flecainide is doing something but it’s not enough?
Correct. But under medical supervision and monitoring you need to increase the flecainide dose for it to be effective. You also need to take it with either a beta blocker or calcium channel blocker for the flecainide to be safe and for the episodes to be less intense. If you don't take the flecainide with a beta blocker or calcium channel blocker, you will go into afib at a higher heart rate and also risk 1:1 flutter.
I'm sorry to hear you have had such a bad experience with this doctor too. Let us know how you go on and if you have that consultation with Sanjay Gupta please? I hope you can get sorted out soon - best wishes.
I am more convinced than ever that my occasional Afib is brought on by digestion. When I'm bloated or slouch i can feel it starting. Normally i can keep it under control by eating carefully and useing a wedge to sleep on. You would think in 2022 there would be more help for milions of Afib patients. I feel completely alone having taught myself all about Afib. I have never seen my cardiologist in over 2 years,so i have asked to see an EP that's another 2 year wait apparently. Luckily my problems are not as bad as some others. Sotalol seems to just about keep it under control, but I'm only late 50,s so i do worry about what the future may hold. Sad to say but It seems to me that the american health system is better at dealing with Afib..I am in the UK
Hi Motov, Would dismiss what you have been told by this EP, he is not a good example of his profession. Start again with the EP you mentioned. Who was your original EP?
This was the first EP I saw. Previously I had three telephone consultations with a private cardiologist who subsequently referred me to this horrible jumped up arrogant NHS EP!
So you can have a second opinion on the NHS. It's your right. I had a really rude cardiologist so I rang the secretary of the cardiologist I wanted to see and explained the situation (delicately) and she asked the nice cardiologist if he would see me instead. Which he did. Now he tells me to do the opposite to my EP, but respectfully! But at least I trust him to listen to me. Otherwise you could see a private EP just for advice.Nothing worse than an expert you do not fully trust.
Good luck
You must feel very frustrated after paying for that consultation. the advice you were given is similar to what I've been told I had an ablation for flutter back in 2019 and that has been successful, as expected but now I get bouts of tachycardia with occasional AF, I was told that an ablation for that does have slightly more risks attached and a much lower success rate. The problem with ablating AF, as opposed to AFl, is the need to push the catheter through the septum and then to ablate near to the pulmonary veins; apparently these can have very varied anatomy, the heart wall can be very thin, and the oesophagus can be right next door and pressing tightly against the ablated area. For these reasons, an AF ablation tends to be far more conservative and thus less likely to be 100% successful, requiring a second "touch up" at a later time.
Perhaps the cardiologist you saw was very busy and under great pressure? I know that's the way these days in the NHS as they look for all kinds of ways to get the waiting lists down. My own cardiologist EP at Leicester is also quite curt in his manner, but not at all in an unfriendly way, it's just his nature. He seems to be a good, doctor, thankfully. Like your doctor, he told me that "vagal" AF is far less common than is popularly believed and that any vagal irritation from a hiatus hernia, say, would create bradycardia rather than tachycardia along with a range of other symptoms in other areas innervated by the vagus nerve. I told him that when I get AF, which is very unusual, I often feel it is, somehow, "gastric" but he was unconvinced of the link or at least not that interested. I mentioned Dr Gupta and his ideas and videos. He'd never heard of him and said he'd have a look.
Steve
Which cardiologist did you see in Leicester?, it would be Glenfield Hospital, I assume. I was due to see one, this month, but they’ve now changed it to a telephone appointment and not till May.Hard to see any Dr face to face these days..!!
Hi Motov
You certainly did not get the best response from the EP you saw, and a medical professional who takes the time to listen and explain things is what anyone should expect. I have had experiences with cardiologists who behaved pretty much like the doc you saw, extremely dismissive of how disruptive and scary AF can be, one even told me not to worry as eventually I would develop permanent AF and then I wouldn't notice it!!!
You mention you live in Gloucestershire so I was interested that you were referred to Birmingham. Back in the day the choice was either Oxford or Bristol, and I had experiences of being treated at both. Every EP I saw was courteous and kind, took the time to explain how things worked and listened to everything I had to say. I had four ablations, three at the Radcliffe and the last at the BRI, each time I felt completely relaxed and in good hands, and at no time did any of the consultants who treated me make me feel I was not worth the bother.
I wish you all the best in your search for the best way forward.
I was referred to Solihull Hospital because I paid for a private cardiologist originally at Spire Parkway. I was referred back to my GP in Gloucestershire because apparently I’d failed to show up for an appointment?? It was a telephone appointment and nobody ever called me!! As my partner lives in Solihull that’s why I opted to pursue my own cardiologist at Spire. I am considering going back to my private cardiologist and asking for another referral to another EP either at the Queen Elizabeth or Warwick Hospital?
I would definitely get a second opinion, it is important that you feel comfortable with your EP. I like Dr Gupta’s videos, I think he is excellent. But having said that he is a cardiologist not an EP.
I paid for a private consultation with Mr Kalla from the Birmingham Heart Rythm Group, they are a group of about 6 EPs. They do consultations at the priory and NHS work at the Queen Elizabeth. He listens to you and offers best advice and helps you make the right decision. I trust him. Private message me if you need more info.
Remember, you will come through this.
Best wishes
Steve
Why not go back to your cardiologist, send him the EP’s report and ask for his opinion and he may well know another EP
I did consider this option to be fair and I believe my cardiologist is now seeing patients face to face again. He definitely has a far better “bedside manner” than the arrogant dismissive EP I saw! 😡🤬
By all means get an appointment with Dr. Gupta asap and pay for it ... what are you saving your $$$ for? He will advise you correctly with logic from experience. Good luck ... I will never ever go the ablation route. No way! But that's just me and I don't have afib that frequently. I would have difficulty experiencing it on a daily or nightly basis or even a weekly basis. Watch your diet ... seems to help. Take magnesium Taurant ... Try Hawthorn extract ... helps. Best, Jan
Ha, ha if only I had some $ to save! I take magnesium oxide, taurine and arginine daily. I eat a well balanced mostly plant based diet and get plenty of exercise but I still get nightly afib nearly every other night, never lasts more than two hours tops and often it’s just twenty minutes or so and so far I’m able to self convert by exercise, jogging on the spot, running up and down the stairs, splashing my face with cold water, elevating my legs and countless other vagal type manoeuvres but it’s not good for my sleep! I’ve read plenty of accounts of people putting afib into remission by diet and lifestyle changes but the EP I saw painted a far worse picture and overall outcome!
Try Hawthorn Extract … 1/8th of a teaspoon morning and night … seems to calm the heart.
That is unacceptable!I am under the care of a very good EP who is very approachable. Proffesor Faizel Osman,at University Hospital Coventry and Warwick,just off the M6. NHS but also private . I saw him as private patient first consultation and then onto NHS list.
We work together very well. I was diagnosed in 2013 and manage AFib and flutter with flecanide,although on list for ablation if need be.
I hope you find a better consultant and would consider giving some strong feedback to this person!
Sorry about your experience. The doctor that performed my ablation was a condescending ass, but procedure went well and 4 years later? Only afib during severe illness. I will need pacemaker as I have sinus pause.
Back to my doctor... while i didn't care for him as a person? He was very impatient and negative (but I've found the negativity was honesty and many ablations fail). He did a good job with my procedure and his staff are very personable.
I can talk with them, but he "fixed" me, so let him be an ass.
It may be that the doctor I saw is very good but he was most definitely a condescending arrogant arse!!
My experience exactly. The good news is? Afib controlled with ablation 5 yrs ago. I only had to see him once before and once after. All my pre and post consults were with wonderful nurse practioners.
Hi Motov
I have similar feelings about my current cardiologist though his attitude does not appear to be as condescending as yours.
Do seek a second opinion.
I think he was correct in stating an ablation would likely not work the first time and explaining the risks. Truth be told, though he did not say, he may feel your condition does not warrant an ablation at this time. It is an invasive procedure that many don't recommend until the patients symptoms are worse and prescriptions do not help.
For what it is worth, and certainly a personal opinion, in my 75 years I have found that the most efficient and qualfied doctors are often arrogant cusses.
Not saying that is right, but it sometimes is fact.
Good luck in your treatment.
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