Hi everyone this is my first post (although I do comment on others!).
Diagnosed a year ago with paroxysmal AF had 6 episodes since. Currently on apixaban & bisoprolol with PIP flecanide. Working fine.
Reviewed by cardio team & they have said I won’t ever be able to have an ablation due to having an occluder fitted for closure of an atrial septal defect. They are recommending a perm anti arrhythmic drodederone. I looked around & read up & not many on this drug.
I am 47 & worried about long term effects of drugs with no hope of ablation 🥺 are there others in my boat (not or can’t have ablation) & how long have you had AF & effective drug treatment? Looking for some hopeful stories to cheer me up! 🤗
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Pigleywigley
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Dronederone (Multaq- Sanofi Aventis) is not that much used as you say. I think it was first approved in about 2008 but faced some class actions in USA due to poor selection of recipients and rather fell out of favour. (Regular lIver function tests are important on this drug). There are a few members on dronederone who find it useful where flecainide or propafenone are not well tolerated. Hopefully they will contribute soon.
Hi. I have permanent a fib and heart failure, I have been told no ablation as would not work. It has taken a year to get my a fib under some kind of control with medication but currently reasonably well controlled. I have had two short episodes since beginning of December. Meds for me have been trial and error due to suffering badly from side effects and have had to stop some and play about with doses in others. I trust my cardio nurse and cardiologist and have had a pretty good service considering. I keep a diary writing down any changes in meds, how I am feeling and sometimes exercise ie walking and food and drink. Good luck. Xx
Thank you. I keep a diary too. I’m very active & run, swim & dog walk. Flec working for me at the moment so I might not transfer - will all depend on frequency I suppose. Sorry your in perm AF 🥺
I'll just add to the thread that flec works very well for me too. I don't blame you at 47 being worried about longer term effects.
However just think - advances in afib are being made all the time. The same with any medicial condition. I think you are the right age were you'll really benefit from these advances and be able to move forward. Time will tell I know - stay positive though as I really believe things are moving forward at a rapid rate. Maybe I'm right - maybe I'm wrong.
Thanks Paul 😊 I call my doggies pigley wigleys (white Staffies look like pigs with pink bellies!)
I need to weigh up flec as pip, flec daily or dronederone. I havnt been able to speak to cardiologists about why they recommend dronederone instead of flec 🤷🏼♀️ they have just written to my GP. Feel I need a specialist to explain. Considering private.
Hi, if I have any questions I email my NHS cardiologist and copy his secretary in. Maybe you could give it a try, I know I’m lucky to have the cardiologist I have and not all are as approachable. I cannot comment on the question about the drugs though as I cannot tolerate any. I had an ablation 11 years ago aged 40. My PAfib started back 18 months ago. Apart from that I’m fit and healthy.
The very best of luck and hunt an email address out for them and give it a go.
You could see an EP privately. That might be a better option as they are more focused on the rhythm side than cardiologists. And they might have a different view re ablation too. I'm thinking of seeing one of those as I have a very casual cardiologist who I now only have phone calls with (Covid) every 6 months. Can't say I'm happy.
"Feel I need a specialist to explain. Considering private"
Yep for sure. It will cost a few hundred but you'll be in quickly. Worth it IMO.
You also wrote
"I need to weigh up flec as pip, flec daily"
This is just my opinion. Flec works as both. I'm in sinus since my CV and I know it's down to flec (2 years in). The couple of times I've gone back in to afib I took an extra dose (on my cardio's advice). It worked wonders and within an hour or so afib went. However my HR was pretty high for a few days after. For me it took about a week to relax a little more.
I can't tell you what to do - your doctor will be best to discuss it with. For me though I'm happy enough to take my dose of flec every day. I know it's working for me - I'm sure about that. It can also stop afib in it's tracks when used as a PIP. Check with your doc the dose you would need (300mg is max in 24 hours).
As for the rest. Anxiety for me after after afib is worse. Others may disagree but personally I feel a few things. First of all a good nights sleep is very important. I also think that in a small dose of something else helps immensely to help you relax - that's another post another day.
Hi Paul your story for another day sounds interesting 🤔 would like to hear that one!I totally agree re anxiety. I manage ‘in the moment’ but afterwards for a few days I’m jittery & low. It’s a proper mind game this one!
I have 300 mg of flec pip & works. I suppose the cardiologists are thinking to prevent them coming on in first place.
Do you definitely need any type of rhythm control medication (how symptomatic are you)? Maybe finding ways of dealing with your anxiety will help. Is alcohol a trigger? You haven’t gone low alcohol drinks have you? Magnesium supplements are popular.
Thanks James episodes 6 in 12 months but this year 3. Don’t drink much alcohol occasional 1-2 glasses - made no link to episodes. No caffeine, cut (ing) sugar, diet good & exercise! Working on my anxiety, hypnotherapy & acupuncture helping immensity. I also meditate daily. Trying my best 👍
Is it your total AF burden (hours per unit time) or your symptoms, or both that are the problem? Runners with slow rates are sometimes predominantly vagal AF and relatively symptom free, and don’t always need rhythm control.
I only run 5-10k not a big runner! My episodes lasted 14 hours without PIP. I’mnot ill but strong symptoms of the alien in the chest! HR can range from 45-150. Occasionally light headed but fine. My PIP now reduces episode to 3-5 hours.
I'm 79, 2 questions for me to answer: Would Ablation make me live longer? And what about quality of life? Sanja Gupta (UK) YouTube helped me with answers. Cardioversion did not work 3 yrs. ago, am in persistent AFIB, but shortness of breath my only noticeable symptom, so I walk slowly. I DECLINED Ablation, too risky at my age.... Am on Eliquis, Lasarton, DXL ??, need new EP, as mine moved away, would only consider an EP vs. cardiologist unless something else goes wrong. I lead sedate life, so not interested in golf, hiking, concerts, travel anymore, just playing cards, movies, friends, family...but with COVID, limited get togethers. Have had both Covid shots. Being 79, my quality of life is the same as it was before AFIB. I don't notice any heart pain, flutters, palpitations, so am satisfied it's "only shortness of breath". Some people are so young with AFIB...I'm glad I only got it when I was OLD. Good Luck with everything.
I am as old as you (just turned 78) but we do differ on how we perceive AF.
If you have been in persistent AF for three years and not considering a rhythm approach treatment, the terminology becomes permanent AF. In terms of symptoms, I am not in a comfort zone to walk slowly or have shortness of breath which is one of the reasons I chose ablation -- three in total. Two were done at 74 years and one at 76. And, I would have a fourth, but at this point in time, I am waiting to see how far Pulsed Field Ablation can go for patients who have had several ablations. By that time, I will be in my 80's. I do lead a sedate life somewhat because I am on the computer a lot; however, I have a lot of commitments that require a lot pf physicality which is the reason I have a low threshold of shortness of breath. And, when Covid is over, I need to cross an ocean and a continent to see my son.
I do agree with you to see only an EP for arrhythmia. I had a lousy cardiologist who contributed to my remaining in persistent for a long time. The waiting time greatly contributed to my deterioration. I also agree with you that young people should be spared AF.
Hi John I suppose it’s working in the moment but not preventing which Dronderone might. I think my mind made up I need to speak to someone directly to help me. Thanks
I think we are very similar, I'm also 47 had a ASD repair and can not have any more ablations( I have had 3 now and said there will not be anymore!)
So I'm hoping my medication works for a long time! I'm on 200mg Flecainide and 5mg Nebivolol. ( Extra 100mg flec for pill in pocket if needed,) Seems to be keeping it at bay and that is the first combination that has worked in 6 years. I was on 10mg Nebivolol but just reduced to 5mg as my heart rate was too low. I think it's trial and error with the meds, the combination I'm on at the moment seems to be helping.
I booked a private consultant with Sanjay Gupta who was great at explaining things to me regards medications...£75 for a telephone consultation. Worth every penny. He's also on YouTube...Sanjay Gupta York Cardiology.
Hi Booboo! Love your name is yours dog related mine is! I am very grateful for your post & you have made me fell less alone! I’ve been watching him on YouTube & his website. I’m was def considering speaking to him. I couldn’t see that he is an EP too - although clearly very knowledgable. I’m interested to know how you had ablation? Have you got an occluder fitted of open heart surgery repair of ASD? Thanks so much 🥰
Hi... No Booboo is my evil mog and that's one of the polite names I call her!
I'm not quite sure what happened with the ASD as I was only 8 at the time and my mum is no longer here to ask but I know I had open heart surgery and it was successfully 'closed' so I presume it was stitched. This caused some scar tissue hence the complexity with the ablations and I can't have anymore now so like you, I'm praying medication will work.
If not, they have suggested Pace and Ablate which to be honest sounds favourable if my AF becomes really bad again. But the meds I'm on at the moment seem to be helping. You sound a long way off yet and there are lots of different medication combos to try.
I'm struggling with anxiety more than arrythmia at the moment so I find Sanjay Gupta so helpful. I don't think he is an EP but I would trust him more than a lot of the EPs I've spoken to in my time.
Please don't feel alone .. this site is my lifeline and I'm here anytime you want a chat xox
Ditto! I’m a hypnotherapist so I would be happy to help with your anxiety! (No charge) I use my own hypnotherapy & I have acupuncture for my anxiety. I’ve been a life long stress head!
Transseptal puncture through Amplatzer septal occluder device for catheter ablation of atrial fibrillation: use of balloon dilatation technique
Ke Chen et al. J Cardiovasc Electrophysiol. 2012 Oct.
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Abstract
Transseptal puncture is required for catheter ablation of atrial fibrillation. We report on a 59-year-old woman presenting with atrial fibrillation after transcatheter closure of a large-sized secundum atrial septal defect with an Amplatzer septal occluder. Direct transseptal access through the device was achieved with the aid of an angioplasty balloon and atrial fibrillation was successfully ablated. Such an approach of transseptal puncture can facilitate obtaining left atrial access in complicated intervention procedures.
I have a similar story- ASD diagnosed as an infant, surgical closure (patch) at age 13, and AF diagnosed at 42 (I'm 47 now). Cardiologist initially said trans-septal puncture through patch was too risky, but I found an EP who was willing to do it, and he consulted with another EP colleague who was also an expert in congenital heart defects to review my case.
I had a pulmonary vein isolation ablation and ablation for atrial flutter last October and have been AF free (knock on wood) without anti-arrhythmic medication since. I did have a few breakthrough episodes during the first few week "blanking period", which were nerve wracking, but apparently were part of the healing process and not a sign of a failed ablation.
My understanding is that cases like ours are very treatable, but not easy for a "regular" EP. I'm not an expert, but according to my EP the challenge is puncturing the patch material or occlusion device in a way that doesn't cause atrial shunting by opening up a large hole in the material. I was also told they would be prepared to puncture the atrial septum above or below the surgical closure if the puncture through the doesn't work as planned, which I understand has a high degree of difficultly, but again still feasible for the right EP.
I am in the Mayo Clinic Health System here in the Midwest U.S., which has been fantastic for getting high-quality and quick treatment of my condition. I'm not too familiar with the NHS, but people on these boards generally speak highly about the amazing quality and timeliness of care received, so it sounds like you should be able to find the same level of care I received should you choose to go down the ablation route as I did.
Anyway, I wish you well and hope you find the best path forward to live AF free, if possible.
Thank you Javelina that is reassuring and news yesterday was surgical ablation option & im booked for a CT scan! May you be free from AF & fit & healthy! 🥰
Hi PigleyWigley, you've had lots of great advice here already. I agree with others that it's all about quality of life in the end. No-one likes the idea of long-term drug use but it does seem that once tolerated you can do well for years on the right medication. similar to PaulBounce I take Flecainide regularly on a lower dose with PIP when AF breaks through. I top find anxiety the worst aspect. Like you I meditate and have done for decades but I'm a worrier by nature. The way you describe your episodes and their frequency is similar to mine ( I'm nearly 16 months in now and have had 2 this calendar year). How are you finding Flecainide as your PIP? Does it work by cutting down the length of the episode? Do you get side effects/feel bad after taking it etc. These are things to weigh up Having a consult with Dr Sanjay sounds like a good plan to discuss medications and that fee is very good. But in your case I'd also be investing in a top EP - cardiologists are not specialist in arrythmia problems, EPs are. I saw Dr Tim Betts privately - he's at the Nuffield Oxford and will be on top of new procedures. He's very good. I'd also recommend Dr Mauro Lencioni at QEH Birmingham. He will be doing my ablation when it comes up on the NHS. I found him very knowledgeable and straightforward and like Dr Betts he's highly experienced. The private consult with Dr Betts was around £300 for an in person, hour long including some tests. I felt it was worth it.
Such great advice Singwell thank you. Sheffield has a great large teaching hospital but I’ve not managed to see anyone I am in a close by smaller town & seen cardio there. Two of the EPs at the teaching hospital operate out of a local private BMI hospital so I was looking at seeing one of them. It’s so difficult to know who to see. 😊
I did an internet search on Top EPs or Leading EPs to find Dr Tim. I checked out the ratings for the cardiology department. The Nuffield is state of the art multidisciplinary team. You're in England so have the right to request a referral anywhere in England. In Wales I couldn't do that. You don't have to stick with your local cardiology if it's not a great department. Ours is Hereford and it's crap!
My approach 7 years ago (albeit different to you, 60yo and following 9 AF episodes in a month) was to decline an ablation offer but to go on daily Flecainide. I wanted to stop it completely due to the assertion that the more you have the more you get and to buy me time for the medics to improve their treatments and for me to explore alternative treatments. As I had Lone PAF, I then started work identifying triggers, visiting Alternative Practitioners and making a multitude of Lifestyle changes (one of which was reducing stress). Current situation: still on Flecainide but QOL overall very good. Hope something there helps.
Hello Pigleywigley,I live in Sheffield so being seen by an EP in their cardiology dept. Am told by friends who are medics elswher in the country that it has a very good reputation.......however like you Ive been barely seen.......even before covid. The EP is much better than the cardiologist Ive found -I have P-Afib diagnosed nearly two years ago. EP said am not suitable for surgery as my P-Afib came on after sucessful cancer treatment so the treatment is probably the cause. He said my P-Afib because of this could be other parts of the heart misfiring so the ablation may not work so wont do it. Im due a phone consult soon so going to ask him what he means as I dont understand. In fairness am doing much better on the calcium channel blocker Verapamil. Also went gluten free three months ago and that seems to have settle my heart rate down which has been an unexpected bonus!!
Sounds familiar re cardiologist. Mine just kept increasing beta blockers despite me telling me they were making more ill he only seemed to have a one stop solution ...lol.......You need to see an EP they know far more.
Hi, I had an ablation 4 years ago and was told they would not be able to operate again due to my heart's position but recently had a check up and was told medicine has moved on and it would be possible... things may change for you in time. 👍
Hi Pigleywigley, I am taking sotolol high dose which is raising QT interval. Dronederone has been stated by my cardio as next port of call if QT gets any worse. My little brain tells me that until flec fails to do the job I would keep dronderone as an option. If it ain’t broke don’t fix it attitude. Talk it over again with cardio.
Thanks Fibber I’m thinking same! Such great advice on this post I’m formulating a plan - emailing GP & cardio secs asking to discuss meds.I work for NHS but I’ve got to say I feel that 1 consultation over the phone in a year is not great. I’ve learnt everything I know from here, YouTube & Facebook 🤷🏼♀️ Thank god for the internet is all I can say!!
Well done you! Yes this site is amazing. I hope you get the advice that you are happy with. If need be then I would have a private appt to put your mind at rest with your EP.
I was put on dronederone after flecainide sent me to hospital. It was much better for me, stopped things like constipation. I had no side effects. You get called in for blood tests every three months to check liver etc but for me it was great. Not on it now as I have had an ablation but would go back on it if needed.
Thats interesting dieppard -my son has been living with me last three months. He is a vegetarian so been eating mainly vegetarian as its easier and only one episode of Afib (due to a very stressful unexepcted situation occurring in my life) .I also went gluten free at the same time so have been thinking that was the reason.....maybe its both? Will ask my EP about this at my next phone app.
Hello, if you would like some help and advice, please do not hesitate to contact us at the AF Association. We have informative anti-coagulant resources available on our website heartrhythmalliance.org/afa... visit our patient resources booklets and please join our 'Virtual Patients Educational Platform' for a variety of presentations by world leading HCP re conditions and treatments Patients Day - Arrhythmia Alliance Group (heartrhythmalliance.org)
I'm in the US. I've been on dronderone for many years, over 10 I guess. I've had an ablation for flutter and one for fib. I've gone through many drugs after the last fib ablation. Multaq is working for me. On what maybe 4 break thoughts in the past year. Another ablation has been suggested because Mutaq is so very expensive here. As long as I'm not having any side effects from this drug and I can scrape up the money, I'll stay on it.
I see Dr Johnathan Sahu at Sheffield. He is very knowledgeable. Did my pace and ablate after years of trying to fix me! I also had a private consultation at Thornbury. That may be worth considering with things the way they are at the moment. Good luck with whatever you decide.
Hello, I have AF and take bisoprolol, warfarin and ramipril , I still get episodes so they don’t stop them but if I didn’t take them I might be worse I suppose. Lots of people on here mention flecainide I have never been offered this what does that do ?
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Ablation or continued Flec
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