Went to see my EP last night and he gave me news I didn't want to hear.I am on sotalol 40mg X3 per day plus apixaban. I have been having episodes about every 4 months but this time I have had 3 episodes, I believe triggered by the covid vaccine and the other time when I was away eating rich food, not sure what triggered the third.
I am very symptomatic and episodes will last for approximately 30 hours.
My EP now tells me to expect the episodes to get more frequent and last longer. He wanted me to increase the sotalol to 80mg twice daily if I can tolerate it (he says it may make my heart rate too low, currently around 55 - 62 bpm). I am reluctant to do this so he has agreed to me staying on the same dosage but take an extra when I get an episode (not if).
He tells me ablation is the best for me but I have to accept the risks. He also said there are no other drugs suitable for me.
I found the visit last night very negative and feel depressed today, still in bed this morning and should be at work.
I want to go abroad again but my EP says I will just be waiting for the next episode.
My brother had just had a stroke and been diagnosed with afib so this has added to my negativity.
What are your opinions on this experience and what would you do?
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Karendeena
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You must have heard before that AF is a progressive condition. There is an oft quoted fact that AF begets AF.
I had AF for many many years before ablation stopped it but it never stopped me travelling. Working on race cars at 35 degree heat at Monza in Italy was indeed a test of resolve but I still enjoyed ever moment of my time.
AF may be in your life but must never be all of your life.
Thank you Bob. Did you travel much before the ablation? How did you cope with the episodes?I see ablation worked for you, the risks he put to me, scared the c*** out of me
63 years in motorsport it is difficult not to travel. I remember changing an engine on a rally car in the middle of Wales whilst in AF once . Mind set is everything.
Doctors tell you the risks not because they aer real but so you can't sue them in the extremely unlikely event they happen. I once suffered a ten million to one event (no not winning the lottery) but came to the conclusion I am too stupid to know when I am supposed to die.
Live every day as your last as one day you will be right.
When I had my colectomy the nurse came to tell me it was cancelled as I was having my pre op shower. She said all my surgeon's ops were cancelled for the rest of the day. I suspected he had had a patient die on the table and sure enough he turned up about an hour later to tell me that that was indeed why he had cancelled it. The patient had had a massive cancer and the success of the op had always been low but it was the patient's only chance and they had opted to have the op knowing the risks. My op was rescheduled for 2 days later. It did not dent my confidence. He was a lovely man and I was pleased he had come in person to tell his patients why their ops had been cancelled even though he was obviously upset about losing a patient on the table.
Have u had ablations before.? Did they help.? Never took sotolol..Dr once told me not good for ventriclesMine.each case different.Intersting about vaccine I think caused pause but drs say no...did say heart could have been stressed
Don't know difference..seems without may not have happened..Nothing to do with stupidity.confusing and we don't understand info..
yes 3 Ablations, 2 in 2010 and one in 2017. Unfortunately none of them worked. That’s my experience definitely not everyone’s. Yes, they definitely can work. My new cardiologist said she would never have done 3. Lots of scarring and lessens the options for AF treatment. I go into AF multiple times a day, doesn’t last long and does not effect me in the slightest. Heart rate 40-180 approx. we are all different there is no norm with AF.
Risk put to me was 1 in 1000 risk of death, 1 in 400 risk of stroke but you always need to add in the context and those odds aren’t very different to what I’m currently living with - I see these odds as positive and the chance that an ablation will resolve this to me is definitely worth the risk for me - Drugs route not an option for me
I agree that drugs are not for me either. I take them, but they do not stop my AFib. Waiting for my virtual visit with Dr. Wolf in 4 weeks. I want off this roller coaster!
Hi Karendeena - I’m sorry that you are having a tough time.
As regards advice, I think many of us ARE in your position. You still have options and I’d choose ablation over Sotolol any day but that’s just me!
Perception is everything and the only person who can change that is you. Like Bob - AF, even at its worst, never stopped me travelling or enjoying life - even when I had to sit out a few experience I would have loved to do.
Your EP was explaining options to you and the risks:benefits - that’s being professional not negative.
So sorry about your brother, just shows how lucky we are knowing we have AF so can take prophylactic treatment to lower our stroke risk.
CDreamer, thank you so much. It's great to be in this group with all the support and knowing we are in it together helps a lot - thank you. I don't want this to control me so you have made me more determined to do what I want to do.
Because I was warned off Sotolol many years ago by a top EP at AFA Patient’s Day who at the time was attempting to get the drug banned for use for AF. I cannot take any heart meds and Beta Blockers in particular. Why would you want to put a toxic drug into your system for the rest of your life? It’s personal choice what treatment you choose.
It is only in the last few years it has become more widely prescribed again for arrythmias.
I have lived with AF for many years after open heart surgery and have never let AF get in the way of my travels. If it happens whilst I’m away, then so be it, but it never has. Perhaps I’ve just been lucky. But I wouldn’t let it stop me from doing anything I want to do. Stay positive!
Mav7 I see him privately he is a top professor in his field so I do respect his opinions. I can't afford to pay for the procedure though so I believe the waiting list is very long, probably over a year
Southkorea, yes, he is at Glenfield Hospital in Leicester, has some of the best heart specialists in the world.His name is Professor G Andre Ng. I found him through an article in the Sunday mail as he pioneered robotic ablation
If it helps,Proff Ng trained my EP Proff Faiziel Osman at UHCW( Walsgrave) Proff Osman has a great reputation and has massively reduced waiting times here for ablations.Just a thought x
I dithered for years( helped by covid shutdown) about meds v ablation.The meds were failing to counteract AF ans A Flutter and I became suddenly worse.
I was worrying about the risks/ what if it became worse/ try new drugs and so on...
I think if your EP thinks you are a good candidate( and in the UK that is based on medical need rather than income generated) then I would go for it.
I am still in nsr since June 2022 and weaning off meds soon( my EP at UHCW prefers to keep us on meds for quite a time after to retrain the heart)
I had both mine done at QEH Birmingham btw. Excellent team and good Arrythmia nurses for follow up. Dr Mauro Lencioni was my EP. Only reason 1st ablation didn't work was I was under sedation and apparently moving around even when unconscious. 2nd time with general anaesthetic was much easier and apparently successful
I would also recommend Prof Osman, he did my Cryo ablation last June and while it hasn’t stopped all my AF, my quality of life is a LOT better than before. Whilst the procedure is uncomfortable under mild sedation it is no worse than a visit to the dentist, although a bit longer 😀. The risks are real but an experienced EP like Prof Osman will ensure they are minimised.
Hi there ,your EP knows the best provided that he is a very good EP if you are confident and happy with him go for ablation otherwise go for a second opinion we are all different in terms of risk factors CHAD scores however , he is right in terms of the frequency and length of each episode.every time I used to get an episode I linked it with a different triggers it’s true something must have triggered it,however,it’s almost impossible to avoid all the triggers . that’s why I had to go for the ablation
I was the same I cancelled my first appt with ablation and in 2 days I got a bad episode so I had to go to the hospital through A&E which wasn’t a pleasant experience and I got the ablation done through the admission
btw my cardiologist was against the ablation he even wrote a letter to my EP to say I don’t need an ablation and he could control it with meds so I was so confused
Unless there are very good reasons why not I would have the ablation ( it sounds as if your EP does not think there are ) . I had a PVI cryoablation Jan 2018 and have not had any AFib since.AFib begets AFib, the more you have it the more you will have it.
I faffed around with drugs for 3 years and just got unpleasant side effects and more Afib. Plus the the hassle of getting drugs, taking them on holiday , worry you get AFib whilst away, days off work in hospital when I got it and it would notv stop .
With hindsight I would have had an ablation the day after my second AFib episode, and missed out years of hassle.
Ablation worked really well for me at age 72. I had permanent AF and was limited to moderate exercise. I am now 76 and much fitter and able to exercise and travel as normal.
hi, 3 years into AF....71 years of age .......about 2 episodes per month during waking hours at present...........they are less dramatic than they were..........am on sotalol , 80mg in morning / 40mg at night....have just increased night to 80mg after discussion with cardiologist as i wake up with pounding heart most nights , according to 7 day monitor i had episodes mainly at night. The past two years have had 3 holidays abroad........... changes to life style help , we just gotta work at it.......Good luck.
Hello Karendeena
I'm sorry to hear that you had such a negative appointment. I do think the medics often put forward 'worse case' scenarios because if they don't patients will be shouting 'you didn't tell me!' if things go south. Or maybe they're just covering their backsides?
As far as travelling goes though, here are my experiences. I'm 66 yrs old with paroxysmal AF and until recently I was having an episode every few months. This past few weeks I was very, very stressed. I was organising my father's 90th birthday party which was a lot, plus both daughters coming over from the US for the occasion (I'm in the UK) and I spent a couple of days in London with my younger daughter who I love to death but we've been going through a really challenging time with our relationship, and it was lovely but stressful. I had three episodes in as many days, and started a very weird pattern of the episodes starting immediately I started eating. (I don't mean after a heavy meal, I literally mean after a couple of bites).
Two days after the party my older daughter and I were going to Amsterdam for a week.....and the night before we travelled I started an episode every time I tried to eat. It would kick off, I'd stop eating, it would stop, I'd come back and try a mouthful again...and it would kick off. I was exhausted and hungry and, to be honest, freaking out, and we ended up in A & E. But the junior doctors were on strike, we were told to expect to be there all night, and we were travelling at 8 a.m. My daughter wanted to cancel or delay the trip, but I talked her round and we left the next morning. Very 'fun' morning as the tube was also on strike and it took us 3 hrs to do a 40 minute journey to St. Pancras International Rail station and we ended up having to run quite some distance with our heavy luggage and literally got on the train 5 minutes before it departed. I can't believe that all of that didn't put me in AF!
Upshot was....we had a wonderful week in Amsteram (just got back last night) and not a peep of AF the whole time.
I also flew to the US to visit said daughters last May, and went into AF shortly after the plane took off and remained in AF until we landing. I did find myself wondering what does happen if you have a stroke at 35,000 feet mid Atlantic? But I decided against pursuing that train of thought and watched a movie instead.
So, from my perspective I would say that you have to get on with your life, enjoy it as much as you can and deal with what comes up when it comes up. The good news is it might never happen!
Gosh. He sounds a bundle of joy! Mine has always told me to live my life and deal with the afib as and when it happens. You can ask for a second opinion on the NHS, might be worth considering xx
Everything has risks. I'd say the benefits of an ablation outweigh the risks as that's the only way I know how to judge benefits vs risks.
I've had 3 ablations. Last one seems to have done what it was supposed to do. I'm guessing your doctor will also want to ablate, perhaps AV node as part of the procedure.
go for the ablation, you’ve got a lot better chance of improving your condition than using medication.
I worried about the risks when I had my first ablation it’s normal. You’re probably more likely to get killed on the road than on the operating table.! I’m a natterer and a worrier by nature but I went ahead and had 3 ablations and my QOL is a lot better than it was. 👍 don’t worry you’ll be fine.x
A couple of points to consider. You are very symptomatic during episodes but your episodes stop on their own I believe?( you don't have to go to hospital to be cardioverted). Your episodes will probably get more frequent. Also you said you can't take other medication ( Flecainide or other beta blockers?) other than Sotalol. This is probably why the EP is advising an ablation.
I dithered for years mainly through fear of the unknown and the episodes got more and more frequent until finally they were every 2 days lasting about 6 hours (the meds helped reduce the lenght of time) My episodes were longer on Sotalol but were shorter on Flecainide.
I finally decided to bite the bullet and had an ablation last June while my episodes were still Paroxysmal ( more chance of success).
I have been off all meds since last October. I know from statistics the Afib is likely to come back sooner or later but I feel I have slowed it's progression for now or for even a couple of years at least perhaps more 🙂.
Maybe put yourself on the waiting list anyway - you can always change your mind. That way if your episodes get worse you have that option to consider.
Thanks Lilypocket, yes I am symptomatic and yes they seem to go on for more than 24 hours, often 30 but slows on the second day so I don't notice it that much. I can't take Flecainide,I had it once and it caused pro-arrythmias for me and that was awful.
Yes, I usually go back into NSR myself, I tend to sit it out as it doesn't make me feel unwell, it just makes me anxious and it really gets to me 😥
I have put myself on the waiting list which I understand is a long one. Thsnkd for responding x
What are your concerns about the ablation procedure? All procedures carry risks. If your EP has a good track record and does 100 + ablations a year then I'd say its worth considering. I've had 2 and no regrets.
Singwell, yes he is held in very high regard. A Professor in heart arrythmias and had a full article in the Sunday Times about performing robotic ablations which is how I found him. I'm just a very anxious person
Oh my, you are going through a terrible time. We had a run of tragedies all occurring close together some years ago, and it was terrible.
I wasn't able to take sotalol or flecainide for my atrial flutter, but bisoprolol and digoxin helped before my ablation in 2019. Did you ask about flecainide? I gather it's a newer and safer drug than sotalol? In those days, my Afl was terrible and full on; I simply couldn't have travelled. Those that say they can get on with life clearly have much lesser symptoms. My post-ablation attacks are like that now, much less than before, and I do just press on and try to ignore it. It depends on what the arrhythmia is doing to the heart's output, I believe, as to whether you have the energy to remain active; add to that coping with the anxiety a bad attack causes and, well - you'll know that feeling!
Hi Steve, yes I am very symptomatic but it does slow on day 2 so I can get on with things as normal When I was first diagnosed I was given Flecainide by the cardiologist along with bisoprolol, unfortunately it gave me pro-arrythmias which was very unpleasant so I can't tolerate it.
Mine was very symptomatic too. I couldn't function while having an AF episode. It improved quite a bit even after the 1st ablation, so I think you'll find it more bearable like PiPman says.
I've read that's a danger of many anti-arrhythmic drugs apart from amiodarone, but that comes with its own problems.
I rarely get a fast rate with AF (which itself is unusual for me) and the symptoms are generally easy for me to cope with but this evening, my Apple Watch showed 155bpm and it was hard work. It went within about fifteen minutes, thankfully, and I as able to take a bisoprolol which helped further. You have my sympathies putting up with that for as long as you do!
That's why I dread it Steve! When I was first diagnosed I was in a routine visit to hospital to pick up a heart monitor. I said "You might as well put that on now as my heart is going like the clappers". The look on her face said it all. Next thing I knew was 3 more nurses came in and told me I was going to have an ECG and then straight into resus!!! I hadn't a clue what was going on and they hooked me up to monitors etc and wouldn't let me get off the bed. My heart rate was 175bpm. They couldn't bring it down with bisoprolol so they gave me digoxin. It converted about 6 hours later. They kept me in overnight and then sent me out with Flecainide. The following month I was back in again, same thing and this time they were going to cardiovert me but I went back into NSR before morning. They added bisoprolol to the Flecainide but then I started having all sorts of fast arrythmias every week for hours on end (one for 48, hours). I paid to see this EP and that's when he changed me to sotalol. I have been with him ever since.
Goodness - what an experience you've had. I've been having lots of ectopic beats for weeks now, then tonight the AF. That's twice in a couple of months, after last June before. It's a devil!
I've had AF for 18, nearly 19 years. Only in my late 40s now, if I'd stopped doing things when I was diagnosed I'd have done nothing in my life since age 29.It really is entirely possible to live a full life. Lifestyle adjustments can be made that help. Only now am I more limited in my activity due to the duration of AF and the impact on the heart structure but I'm still working full time, exercising daily, travelling etc, just all a little differently than I would have before.
I've been in persistent AF for about a decade. In many ways it's easier to manage cos it's just there.
Ablations are really very low risk. I've had 3. Unfortunately because it was so far down the line being offered them...only had them last year...they did not work for me but if you are still intermittent you'd have a much better chance of it working I would think. Certainly worth discussing. And, of course, ultimately your decision.
I presume from what you say Fleacinide is out. You sound like you are aware lowering your HR any more will probably make you feel unwell.
We can all only relate our own experience and subjective approach. In your shoes I would first resolve to take priority action looking at the information that you trust out there to remove the impact of the Covid 'vaccine' and double down on improving lifestyle choices. If I saw no improvement I would take up the ablation option.
RE 'vaccine' I trust these experienced doctors covid19criticalcare.com/tre... and Nattokinaise has been mentioned to negate the spike protein from the 'vaccine' BUT you have to consider with your own medics advice as Natto has 'blood thinning' qualities and you don't want a bleed.
Go for an ablation. Are you on blood thinners? AFib and stroke go hand in hand unfortunately. I couldn't tolerate Sotalol, brain fog, fatigue and bradycardia. EP took me off them and refused to prescribe anything else. 10hrs of AFib rvr every three days. Continuously exhausted. He refused an ablation because of my weight. My bmi was 32. It had been 45 so I thought I was looking better !! So I changed EP. Ablation done three weeks after I saw him. Nsr since. Three months yesterday. Then again new EP would have tried other drugs before ablation but because I'd been left to just get on with feeling awful, he suggested ablation or Huge doses of Sotalol and a pacemaker for conversion pauses. I went with ablation. I didn't actually realise how awful I felt until I didn't feel awful again. Alleluia for second opinions.
Hi Mary a so pleased you got sorted. Yes, I do take anticoagulant Apixaban and I can't tolerate Flecainide it caused me to have pro-arrythmias. I don't want to keep waiting for the next episode which is what I have discussed with my EP, he really thinks that ablation is the best way forward for me so I am on his waiting list which I am told is a long one!
My advice, get friendly with his secretary, tell her you can deal with the shortest notice period possible to get from your house to the hospital. I was very symptomatic, I still travelled, just everything at a slower pace.
Hi Down10FTN, my EP wanted to increase my sotalol to 80mg twice daily but he says I would have to see if I could tolerate that dosage as it might slow my heart too much (it currently runs around 55 - 60bpm and I have lowish BP at around 100 over 65). I know sotalol is a powerful drug and that scares me too. If you don't mind me asking are you still on it and what is your heart rate /BP?
My resting is 43. (Always had a low heart rate ) Before sotalol my resting rate was 50. So about 14% slower. My MAX heart rate is LOW! I hit 110 at the gym in a dead sprint on a bike. I sweat bullets at 80bpm. My BP is usually 120 over 80, but was that with 25 mg atenolol before all this started. The sotalol is a beta blocker, but I believe it is primarily used for pacing via potassium channel blocking. I would be tempted to go for the higher dose. You will know quickly if it is too much just by getting lightheaded when you stand up too quickly.
Oh, yes. Still On sotalol 120mg x 2 for next 3 mos and see how ablation holds. Found a formula for max HR on beta blockers... 164-(.7 × age) which is 120 for me @63yrs.
I’ve been through the wringer trying to control Afib/flutter: multiple drugs, four ablations, and five cardioversions. The ablations were the easiest things to tolerate and gave the longest relief. Yes, the recovery process takes some time (for me, 4-8 weeks), but it’s worth it.
After a long period in NSR, I’m back in atypical flutter and therefore scheduled for my FIFTH ablation. Yes there are risks, but I’m used to them considering my current EP is really good and the benefit of being in NSR is great! Odds are you’ll be fine!
[btw, Cost and timing are not problems as I’m on Medicare and in a blue state (NM). My first ablation was cryo at Baylor on employer insurance and very costly.]
hi - I can only share my experience and hope it helps - I have travelled whilst in afib - once just getting on a plane and also on a ferry to Spain / this was at a time when any hint of excitement triggered it as well as caffeine, alcohol, exercise, eating too much, eating too little.. the key whilst travelling was not to panic it wasn’t going to kill me, take it slow take pill in pocket and it would eventually pass… but I didn’t really want to live like that - so went on waiting list for ablation.. 1st didn’t work 2nd has held so far since August and I feel like I have my life back without the af anxiety… I’m still careful with triggers so as to hold it off coming back as long as I can - as the waiting list is a year nothing is lost by joining it and see how you feel then - wishing you well
Hi Karendeena, I'm sorry, I know this is all very distressing for you. I assume you have tried adding in flecainide (either Pill in Pocket, or daily) or even amiodarone (the one that can have side effects at higher dose, but low dose often works wonders and has few side effects for many people--my mother on it for 24 years at 100 mg, never had another AF episode and has NO side effects).
In my experience, EP's just keep recommending ablations, and I feel that none of my EP's have ever known enough about drug therapy--it is not "their thing." But we know ablations are not a sure cure either, as many here will tell you. By changing my meds, I went from having episodes every week to only having 1 mild one every month or 2, which is very bearable for me. So on the right drug/s, it is possible to extend the periods between episodes and feel more in control of your life. I just travel with my meds, and practice breathing, singing, resting, staying hydrated, etc.--knowing that the calmer we are in general, the fewer episodes we seem to have. Praying this can happen for you... All good wishes, Diane S.
Thanks Diane, yes I have had Flecainide and it caused pro-arrythmias 😥I do have a lot of stress as my mum is 95 and I look after her, she has turned from best friend to worst enemy. I also still work but love my job and like being with people. He did mention amiodarone but I'm not keen as he said it can have nasty side effects. Good to hear that your mum didn't suffer any
I agree with you about ablations and also the same about cardioversions in my opinion, and my new EP feels the same. They are money makers and although there are no guarantees with anything pretty much whatever they do to worse it’s just going to be a Band-Aid. Not being a doctor, and not knowing how many things this person has gone through it’s just too hard to really comment because we are also different. They sound a bit like me, but I don’t understand why the doctor would say there are no other meds. I think they need to meet with the Doctor again and talk about options. I would be depressed. Also, it sounds like the doctor is a real Debbie downer. When my cardioversion failed Christmas week, my doctor was beside me when I woke and holding my hand, patting it telling me don’t worry we’re gonna take care of this. I had cried when he told me they had shocked me three times with no response. I was very lucky my first to ablations one lasted six months the second lasted a year plus. During that time I forgot about having afib. The more I learn about a fib though the more I realize it does what it wants.
HI DawnTX, I am sorry that you also have been through the wringer! Yes, it seems they often push cardioversion a little too quickly... before trying the many medical options in the ER. I am trying to avoid ablation and cardiov. by working on more lifestyle changes, supplements, exercise, breathing, etc. It has encouraged me that metoprolol, breathwork, and a few other techniques have cut my episodes down significantly. Wishing the same for you. Best wishes, Diane
Hi than you for the kind words. Actually, cardioversion what is the last thing they tried for me before we went to pacemaker. Prior to October there was no pacemaker for my condition. I would’ve ended up continuing heart failure, and the only option is transplant which I probably would not have been able to get. My doctor does not believe in doing things that failed over and over again. He said my heart was badly scarred so he did not want to do another ablation. I did get one, but it was the AV node which is different. Thank you again I am feeling pretty good right now . It’s one day at a time like everything in life.
Go for Ablation.I had Paroxysmal AF for 4 years.Only medication given was for Rate control & learned to recognize triggers & just sit it out.I travelled to Portugal all the time no probs.
2021 switched to Persistent and had a crippling month or 2 but this settled down .Still there but lower level.
Had Cardioversion a year ago which lasted 9 days and an ablation 4 weeks ago Still in NSR .Never any medication other than Adizem & anticoagulation.
I Did a post on the actual procedure if you want to look in my previous posts.
AF has never stopped me going to our holiday home in the winter.
I do understand your worries about travelling. Mine are slightly different in that I’ve gone into persistent A Fib now, and did so just before my ablation last year. It only helped for two days, but I will still go for another if the EP recommends it.
I don’t worry as much about going into it while travelling - especially since it’s persistent. It’s just the planning ahead with other procedures possible. I believe insurance is steeper for those on waiting lists.
I do really want to visit my daughter in Canada again though,
What is considered persistent AFib? I only ask because I don't know enough about it. I've had AFib for many years and over the course of the past couple of years it has increased and since January it is 5 out of 7 days each week.
I think it’s where you don’t come out of it at all, without an intervention such as a cardioversion. Sometimes they say ‘longer than seven days’ - but information varies. With 5 out of 7 it sounds like you’re still reverting natura rally.
I was having week long episodes when diagnosed last spring, but would have almost a month free between them. So I felt it was still paroxysmal. Last summer, shorter episodes.
Then in October I went into one, tried ‘pill in the pocket’, which didn’t work. (I had Covid two weeks previously, and was fine at the time but wonder now if it changed something.) Ablation in December, then within two days I was back in constant AFib.
My first cardioversion lasted until I got home. We prepped for the 2nd by using a pacing drug(sotalol 120 x2) and the 2nd held steady (We still did an ablation after considerable discussions. 4 weeks out and recovering better than expected. Still taking sotalol)
I maxxed out on Sotolol as well my Afib just kept getting worse while on it. They scheduled an ablation and prior to it he put me on Amiodarone 200mgs a day and I went into NSR and stayed until my ablation that was on Dec 30. 2022. after the ablation he reduced the Amiodarone to 100mgs and I've been Afib free since. The next step s to stop the amiodarone completely April 1st. He also told me if I go into afib for longer than an hour to take 400 mgs of amiodarone a day until back into NSR. Hoping I won't need to do that for awhile. Good luck.
I have no idea on your past history how many different meds you have tried, etc. but I am very surprise for him to say there’s nothing else for you. As far as your anti-coagulant, you probably realize you’ll be on one of those for life. Even with my new pacemaker, I was told that. It’s fine with me as one who has a brother who just had a stroke. I’m sure you would like to try to avoid that. I am not familiar with your other. I had been on Multitaq along with metropolol XL, which I am still on that now off the multaq because of the pacemaker. I had a cardioversion that failed in December. When they did that they were also going to put me on another medication and keep me in the hospital to be watched. Unfortunately I never got to that because of the failure. The medication was Tikosyn. There are a few people here on the site that take that with great success. I was put on digoxin, which actually helped to bring my heart rate down to 100 do you have ventricular tachycardia? The digoxin helped unfortunately, after two weeks it started to fail. It was doubled, but failed again. My body has pretty much rejected. Everything tried, including three ablations, one being the vein of Marshall. In December I was told I was at the beginning of heart failure that is when we talked and planned on a pacemaker. It has been three weeks and I wish I could turn the clock back and have it done three years ago if they would’ve done it. There is a new pacemaker out, that is able to handle my issues prior to a october in the states it had not been approved or available. It is also available in the UK.
You need to have a good talk with your EP depending on what’s wrong and oblation may not suit you. I am badly scarred so my EP did not want to do another plus depending on where your problems are it may be almost impossible to map. Mine are and he said even being off a millimeter would mean it would not work. My EP wanted to get me to quality of life. Depending on your heart rate, it’s not just the episodes of a fib, but your heart rate is wearing your heart down. Sooner or later, your meds will start to not work as well anyway because I think our bodies get used to them like anything else. My heart could not take any more of a beating. Neither could I as a person you just get worn out. Please talk to your EP I don’t want anyone to think I’m selling pacemakers, but depending on how bad you are, ask your doctor if he sees one in your near future. I’ll be honest with you if I could turn the clock back I would’ve asked about one because of how good I feel after just three weeks. my doctor told me in about six months. I should be able to do just about anything anyone else with a good heart can do and it may even help reverse my heart failure. It’s a big step. Yes, I was dead set against it two months ago, but to feel normal after only three weeks OMG I have a new life and I am so grateful
I wondered if your cardiologist would offer you Dioderoane in place of Amiodarone. I had a recent telephone call from my new cardiologist who has suggested that l should consider taking Dioderoane as it's side effects are not as severe as Amiodarone and he already has a few patients on this drug with no obvious side effects.
He knew that l was already offered amiodarone or pace and ablate but l was reluctant to take up either offer. Firstly Amiodarone due to the long list of side effects P&A as it's the very last option.
I haven't spoken to him again since as l am currently in lots of pain with a fractured upper arm (9 weeks on) and a badly upset stomach due recently diagnosed IBS. I will need to make a decision sooner or later as my Afib is becoming more progressive to once or twice a week but l am going to wait until l feel a bit better.
I was highly allergic to amiodarone besides the side effects of that stuff. If they offer you pace and ablate , I would do it. I say this because I just did three weeks ago and cannot believe how good I feel as of this week. The other two weeks were just mostly normal after any procedures. To be able to do the things I have not been able to do for well over a year is just amazing. Everything else to me is a Band-Aid. Everything is temporary as you have probably already seen. An ablation is only good if they get it in the right place and even then it may hold but then you have another spot. I hate to sound negative, but I have been there done that for the last three years. I was dead set against p and a I was going to get a second opinion as well as I made a list of questions. I really like my doctor. It was the pace and ablate I questioned. Before I could ask questions, he gave me the answers, and I could understand what he was talking about. He talks to you not at you. After that I felt I had no need for a second opinion or anything else. First time in three years, come October that I feel human and normal again. The past year has been sheer hell I’ve been unable to walk and only shuffles to places like the bathroom while I was in extreme pain. Only you can make the choice but the fact he offered you the pace and an late probably means sooner or later you’ll be going for one. My EP believes in quality of life sooner than later. He does not believe in repeating things that did not work, whether it’s cardioversion, meds, or ablation. I feel I had a lot of time wasted doing all of those things, and being so depressed when they all failed sooner or later. Best of luck in whatever you decide, the fact I can take my dog out and walk him around our acre of land now just thrills me and stand and wash the dishes or do laundry. All things I could not do three weeks ago.
Hi there. I am a year older than you, and had a cryo ablation in 2015. It was fine and I felt so much better straight away.
Pre-diagnosis and pre ablation we went on holiday. I didn’t know what the strange feeling in my chest was … my GP was treating it as indigestion. Turns out I was in AF about 30% of the time. I just got on with the holiday (Budapest) and put up with the weird feelings and breathlessness, only making my husband go out on his own once, so I could have a lay down ( my heart was jumping all over the place and I was also recovering from a Total Knee Replacement at the time!)
Since the ablation things have been good. Not 100% perfect but good. Cardiologist says I have ‘an excitable heart’ and I just regard it as such. It does it’s own thing now and again and I just try my best to adapt to it. I now take Edoxaban as a precautionary anti coag and a small dose of Bisoprolol.
Since ablation we have travelled extensively as we have always done. We were in Israel in October and I am currently writing this from a very warm Marrakech! We always organise our own trips so that there’s flexibility to take a lazy day if needed and make sure we have good insurance!
I am similar to you.Sotalol is the only med I can take successfully, too. Others either didn't work, or side effects were too severe - or both.😏
I have far more frequent episodes than you - currently every 4-10 days - but much shorter duration than yours (around 3-8 hours) but like you, they are *very* symptomatic and disruptive.
Covid infection increased my AF from one episode every 6 months to every other day.
The Sotalol has racked that frequency back a little and I feel much better.
I have zero CHAD score and do not want ablation.
AF is different for everyone, but it is progressive and so will only get worse with time.
My two pen'orth is take the Sotalol and see how that works for you. If all it achieves is to buy you some thinking time, that is a good thing
Do not accept ablation unless/ until you are happy.
Ablation is not the only game in town.
It is just the quickest, cheapest and most common surgical intervention, *not* necessarily the most effective.
Research all other potential surgical options and proceed only when you are satisfied that the benefit of surgery outweighs the risk for you. That tipping point is different for everyone.
We all have days when medical discussions hit our sensitive spots, so your depressed response to the negative tone and content of your EP meeting is only human.😏
Doctors are only human, too, and sometimes do not communicate well, so try to review what the EP said when you are feeling more analytical and less emotional.
Tell him how you feel. Ask him to put things from a positive angle, because there *is* one.
Get a second opinion from another EP if you feel it is helpful.
All this advice is not supported by any medical knowledge.
It is just my opinion based on my experience, which is similar to yours, and I replied to you because I am in a similar place to you on my own AF journey.
Just a few comments - Have you asked your specialist if you can have alternative medication to the Sotalol - I was diagnosed 18 months ago and put on Bisoprolol, and I believe there are some other meds you can take instead, such as Diltiazem if you have a problem with betablockers. I'd also get a 2nd opinion if I were you.
I was interested to read that your AF symptoms were exacerbated by the Covid vaccines - mine were also - and severely, within several days of having the vaccine.
Also, just f.y.i., no matter what certain doctors say, the truth is, evidence confirms the mRNA vaccines can and do affect the heart. For example, the very reputable heart magazine, 'Circulation', published by the American Heart Association, following tests for effects on the heart, stated, in the edition published 8 Nov. 2021 "We conclude that the mRNA vacs drastically increase inflammation on the endothelium and T cell infiltration of cardiac muscle and may account for the observations of increased thrombosis, cardiomyopathy and other vascular events following vaccination."
The majority of doctors haven't heeded all the science that's come to light on these facts, which shocked me, and forced me to research their side effects as far as I could. As I told them: It's my body and I wanted to know just what was going into it! (especially as the vaccines hadn't been tested or trialled on humans).
You may, seeing as 'Circulation' is one of the most reputable and prominent heart publications in the world, consider showing the quote to your doctor and see what his response is. I showed it to my GP, who was trying to compel me to continue to have the vaccines, and he was unable to say a word! I tried to share the excellent reports and conclusions some of the world's best epidemiologists and others discovered about the vaccines, but to my amazement they shut down totally and wouldn't listen, and then I discovered that millions were having similar experiences.
The heading of the magazine quote is "Abstract 10712: Mrna COVID Vaccines Dramatically increase Endothelial Inflammatory Markers and ACS Risk as Measured by the PULS Cardiac Test: a Warning", in case your doctor wants to look it up. The quote states the Abstract can also be found in full at this website address:
(I can never find articles with these sorts of references, so hope you have more luck!)
This is a separate but vital subject I believe every heart patient should be made aware of - but as I say, I mention it here f.y.i. as you mentioned you had effects on your heart after the vaccines. I certainly won't be having any of the Covid vaccines again, or any other that I find affects my heart. I was terrified of what was happening to me.
However, pleased to report that at present the AF is controlled pretty much on the medication plus magnesium to calm the heart, (what a wonderful product magnesium is!). I found Magnesium Bisglycinate is the best as it is non-buffered (has no additions to it) and doesn't cause diarrhoea. The first say 6 months were hell - extreme tiredness, unable to walk 2-3 metres without having the rapid pulse and breathlessness start - brain fog, confusion, lots of fear, anxiety and depression, which NOBODY seemed even interested in! I didn't know if it was medication doing this or the vaccines, but the more I researched the vaccines, I discovered many people have had concerning side-effects and some far worse than heart or circulation symptoms.
However, I found all answers I needed from globally-reputable Doctors and medical scientists Robert Malone, Peter McCullough, and their colleagues, on Brighteon and Rumble online platforms (non-censored, free of charge). This was mind-bending, but so very important. Anyone who doesn't listen to what they know in my view is doing themselves harm. There's nothing of course that can be done about vaccines already taken (out of fear and mandatory vaccination rulings by politicians most of all, which I am still very angry about); however, I'll never as long as I live again consent to have anything put into my body that causes what these ones have, or from fear created in me by other people who, as I found, really and surprisingly mostly don't know what they're talking about.
Hope this might help a little. Everyone is different but every experience from others usually can assist, especially when a person is new to the condition. You will feel depressed and upset at times, but the more you correspond with the very helpful members of HealthUnlocked as well, I'm sure you'll feel easier and more confident.
Sorry this turned out to be so long. However, I hope all goes well for you and you get to go abroad again soon!
Hi there, thank you. Yes, I believe the vaccine triggered it. I also think the vaccinces started me on the long journey with polymyalgia which came on after the second Pfizer booster. I am still struggling to get off the steroids today. My inflammation markers went through the roof and I was in so much pain in my neck and shoulders with this. Something else I am struggling with on top of the afib.
Like you, I will never take another covid vaccine.
I also think the astra zeneca vaccine started my brother's problems and now he's had the stroke and struggling with mental health
That's very sad to hear. We live in dangerous times indeed - if you're blessed enough to have a truthful, honest and trustworthy set of doctors who still live by their oath to 'do no harm', you're blessed indeed it seems. The things that are happening now are often frightening, and I'm very grateful I have a strong Christian faith (Protestant) that has gotten me through thus far!
On the practical side, I found this very helpful health talk on Rumble dealing with fibromyalgia and the speaker confirms that Covid in fact has worsened this condition, and how to treat it naturally. Barbara is a trained Australian naturopath and has had wonderful results from her natural treatments where doctors have failed. She is very knowledgeable, very down to earth, and lectures around the world. Here's the Rumble link: rumble.com/v29pfsq-barbara-...
She has many lectures on YouTube and Rumble and other platforms which you'll see as you search for her name: Barbara O'Neill. You'll see the many, many comments beneath her videos testifying to the way her information and treatments have helped them. Here's one on Rumble that I believe covers stroke and how to help recover from it: rumble.com/v29pfsq-barbara-...
If you click on the links in this message they should take you direct to each lecture. If not, just go to YouTube or Rumble and sign up or register - all free, if you don't already know. There are a few others specifically on heart health which I recommend also and you will see them listed after you type in her name and 'heart health' after. Barbara is also a Christian and she will mention a few Bible texts but just so you know she's not preaching sermons! If you're not 'religious' I hope you won't let that stop you obtaining her health information - her knowledge is truly dynamite in this chemical-drugged world - and it works. Just go at your own pace and apply little by little what she suggests: you'll be able to see the sense in what she says as you go through the lectures. I pray things begin to improve real soon for you and your brother. Best wishes!
I was about to reply, but then you said what I was thinking. There is nothing you can do about a vaccine. You already have taken. There is no antidote for it because of course they continue to lie anyway about it as a whole. I got Covid last year although my take is a little bit different on my vaccines. I only got the first two I will not get boosters, I think they are a sham. My Covid did not feel any worse than the flu. I wish they would stop trying to terrorize people with the sheer name of it and all these extra types. Is it the flu like that? That’s why you need a shot every year because it changes , I think Covid does as well. I have a feeling the first round that killed so many people I actually want to see murdered. I feel whoever was behind it, murdered all the people who died from it. I am not even looking at it politically just overall what the pandemic did to people, and to us all mentally and physically and financially. Onward we must go with our battle with a fib and put all the rest of the garbage aside because all that’s going to do is exhaust us. Those who did this to everyone do NOT care.
I hope you continue to do better. My body has rejected everything tried so I finally got a pacemaker three weeks ago. I would’ve taken it three years ago if I offered but unfortunately for me, it was not available at the time because I needed a different type. Best of luck to you and everyone else dealing with this nasty thing called a fib.
Thanks, Karendeena. Yes, agree with all you say, and the description of just who has been behind it (at least, as far as at this time can be discerned) was revealed openly by at the senior reputable medics/scientists I mentioned - Peter McCullough, Robert Malone and colleagues, plus many others who realised more was going on than we knew (i.e. those of us who previously all through our lives believed we could trust our doctors & medical scientists to truthfully defend our rights to be fully informed on any treatment they proposed). These men produced evidence that simple, natural remedies when heeded, certainly do prevent Covid from causing death and serious harm, and that the cost of those treatments, being miniscule, would have saved countries billions of dollars spent on the vaccines and resultant treatment needs. Dr McCullough for example tested and found that simply doing a nasal rinse of 1/3 cup of Hydrogen Peroxide mixed with 2/3 cup of water kills the Omicron strain of Covid - this germ lodges at the back of the throat and sniffing the rinse up through the nostrils and down the back of the throat, destroys it - as I recall, in about 3-5 days! Simple and inexpensive. I read news reports of entire tribes in Africa and I believe areas in or near Israel who practiced such simple remedies had no record of Covid infection at all. Some almost 30,000 I think it was American senior medics, scientists & GPs protested their concerns to the American senate and that 5-6 hour long formal meeting was, yes, exhausting, (I watched it an hour at a time) - but also fascinating - you can still view it on Rumble and Brighteon, I think. Unbelievably, however, for trying to warn the world those brave men and their families have been ruthlessly persecuted. I've always been against mandatory vaccinations forced on us by politicians who of course knew nothing about the side-effects of these vaccines, just as nobody else did - simply because there were no trials of them before we were ordered to get them, which has never happened in the history of medicine before. Forcing us to have the vaccines also violated our Constitutional rights, which is the other side of this diabolical coin. In the light of all I was hearing from the faithful medics and scientists, I flatly refused any boosters after, as I said, having submitted, against my better judgement even at that early stage, to have the first two shots - caused only because of the amount of fear those 'pushing' the vaccines were speading. I was TOTALLY gobsmacked, therefore, just two weeks ago - after all the mandatory vaccination enforcement that has gone on, applied with pressure and threats - to read a news report announcing that the Premier of New South Wales, Australia, Dominic Perrotet, had suddenly confessed to the world that he knows the vaccines do NOT prevent the spread of Covid from one person to another!! This, after spending the last 3 plus years commanding everyone in the State (as has every other Premier in Australia) to obey and get the vaccine or lose their jobs, their right to enter restaurants, travel, enter shops to buy food - whatever! So again, the question continues: if this is so, why are we still having these vaccines enforced upon, or even recommended to, us? It seems clear to me we were the guinea pigs - and global vaccination WAS the only trial! Many people who have had Covid have described it as you have: as being no worse than a bad cold in most cases. People have to realise they need to research the EVIDENCE for themselves before coming to conclude on such vital issues and that many people including doctors and nurses, are finding these things are true also. Hopefully they'll also realise that Drs McCullough, Malone etc simply made these vital issues far easier for us to be able to understand and make intelligent decisions on.
Finally, however, (attempting to move forward again!), I do hope your new pacemaker will make life a lot easier. It sounds like you and your brother have had quite a rough time.
I had Covid last March. I do believe my initial two vaccines made it a light case. The bad thing about Covid is by the time you know you have it. It is too late. I’m like other things it seems to lay quietly, then suddenly hit you hard. To me, though it was like the flu, I think they should just call it the flu I don’t see a big difference except for the different names each time it changes, but then again, they do that with the flu which is why we get a different shot each year. I am a believer in the flu shot because twice I did not get it and well over 25 years. That is the only time I got the flu. My side effects were limited to a sore arm and a little lump. My cousin cannot take anything with eggs, so I know there are people that just cannot take anything to prevent. When I had Covid, I think the headache was the worst part and being exhausted all of the time wanting to sleep. My a fib had come back, so obviously that did not help anything. It’s amazing how easy it is to get it from another person. I was pretty much away from everyone, except for living in a hotel. I did not stray much but I was aware that some of the hotel workers had Covid and did not stay out of work. To this day, I don’t know if my cousin gave it to me or I gave it to him from the hotel but we both had it within a day of each other. our government has made Covid a mysterious thing and it seems like they are constantly trying to scare people into getting more shots. They are still pushing boosters. A booster was some thing you got after a few years of getting a particular vaccine to keep it boosted up and working. The ones they have now are ridiculous in my opinion because less than six months and they tell you you need a different one. There is so much garbage mixed in with Covid. I believe it does exist, but is being presented with smoke and mirrors to frighten people and I believe someone out there started it and they and others are profiting from it including all of the medical gear etc. needed. In my opinion whoever started this to begin with is guilty of murder of all the people who have died from it. No you don’t die from Covid you die because you have a weakness that it attacks just like the flu or pneumonia . Will do it to you. I am not anti-vaccine normally but please everyone be careful and it’s not just from the states. Anyone will sell us out for the right price my opinion only unless you agree. I get so angry, because so many people just do it without thinking of consequences.
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Advice please
Sotalol for Atrial Flutter
Afib on Sotalol
Am I really an 'enigma'?
