Just a little update . As you know I had a couple of Afib incidents in the days following my RF ablation. TThe EP had taken me off Flecainide and Bisoprolol immediately after the ablation. Following which I had some AFib. The EP put me back on the meds ( hope you are following!). All OK for a week but very slow rhythm with pauses and ectopics. But today the heart surpassed itself. It started at 7 am ( 6 UK time). Off we went for a long bout of Afib ( 160 bpm recorded on the Kardia) with 4 moments where I nearly passed out. That popped into fast regular rhythm with a bucket load of bigimy , trigimy, ectopics. But the heart still had a rabbit in the hat! The HR plummeted to 35 bpm with a big pause. I nearly fainted but it passed and off we went again in varying arrythmias. 9 hours later à sort of curtain came down in front of my eyes ( uh oh). Then boom. Heart rate finally dropped to a nice 69 bpm with extrasystoles/ bigimy. Much better! Had a quick talk to EP ( who kept saying " it's early days". I know that but didn't expect the whole spectrum of rhythms available to the heart in one day lol) . And guess what? I have to stop all meds again. I tried to remind him I had Afib after the ablation while not on medication.
I admit I'm nervous as I'm going to feel like a trapeze artist without a net. What do I do when I have a spot of Tachycardia again. But it's true when I was off the meds my heart behaved apart from 2 Afib episodes. Since taking the meds the rhythms have been strange. I wish I could have a PIP but it's only Slow Release Flecainide ( to stop self medication?) in France.
If you got this far thanks for reading. More seriously if any members who have had an RF ablation experienced this (on or off meds) I'd love to hear from you.
In the meantime try not to melt!
Take care
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Lilypocket
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Sorry what's going on. Never had an ablation so others will better to be able to assist you re what's normal or not during the blanking period, but "nearly fainted" doesn't sound normal or safe. Were you on the bisoprolol when your hr dropped to 35? If so, maybe that's why he took you off all the meds but it would seem that you need a plan to get your heart rate down if you go into fast afib again. Does your ep just want you to ride out fast afib and for how long? I used to use fast acting Diltiazem tabs to bring rate down when in fast afib. Maybe talk to him about that. I would take 30-60 mg and then wait for a couple of hours and then some more if more rate control was needed.
Oh how I wish I could Jim. He doesn't want me to take anything which is very worrying. He believes the combination of Flec and Bisoprolol is pro- arrythmic after an ablation. If EPs can't all give the same advice how the heck are we poor mortals supposed to manage. I tried to negotiate a bit of Bisoprolol. But no.
Hi Lily, Yes it is the conflicting advice that sends us in a spin. I have been kept on bisoprolol and told to stop the flecanaide straight after my ablation but to go back on the flecanaide if AF becomes bothersome. If I do go back on the flecanaide does that mean the ablation as been a waste of time? Surely we need definitive answers to these questions. Is the answer to ride out the AF and eventually the heart will normalise? I am not sure. I hope things get easier for you x
Yes it's a bit of a rollercoaster. I would feel much more reassured if I could have a bit of Bisoprolol ( or any other rate control) in case of an Afib episode hitting the roof and lasting more than 30". Do we know why they want us to stop so abruptly while others continue. The latter makes sense to me. X
The thing is after my first ablation I was told to stay on the beta blocker and flecanaide until the 3 month phone app with EP, that turned out to be six mth because of covid. When I was told to come off the meds after 2 weeks I had numerous episodes of AF, so I was then told to go back on meds until a second ablation was organised. Now told to come off flec and stay on bisoprolol. I am hoping the EP knows what is going on with my heart and is applying this regime accordingly.
Well I'll try no meds and report back to him in a couple of weeks. But since we don't see the EP during the weeks after the ablation ( in general) it is a bit difficult for us because we can't explain our own individual experience . It's true I had mine on the phone but I felt as if he was very busy and " it's early days" is not enough information to help me understand if what I'm experiencing is normal. x
Exactly !! And it is difficult to share info on here because we are all different in our own individual “recoveries”. Hang in there and see if your heart can settle without meds, that would I think be the scenario we are all looking for.
Have you not got any meds left at all? It sounds very unsatisfactory. Have you said how worried you are about the prospect of 160bpm for prolonged periods? I did not know that Flec was only slow release here. I was going to go and see my cardiologist to see about getting some as PIP but probably won't bother!
Diltiazem is a calcium channel blocker that is sometimes substituted for bisoprolol, which is a beta blocker. They do similar things in terms of rate control in afib and nodal protection, when used with flecainide. Not sure why he thinks flec is pro-arrhythmic after an ablation because many ep's prescribe it during the blanking period to keep people out of afib! I would at least ask him if you could try at least the fast acting diltiazem tabs as a PIP to bring down your rate should you go into fast afib again. Wish I could be of more help.
HiNot Metropolol or Bisoprolol kept my RAPID & PERSISTENT H/R with AF CONTROLLED.
But I went to see a private heart specialist who tried me on 1/2 dose of Diltiazem. I dropped 100 hr day.
Twinked and balanced I take the Calcium Channel Blocker 120mg Diltiazem am and 2.5 Bisoprolol pm.
I dont feel the AF as I have a stick out left ribcage.
CONTROLLED. 123/72. 77-88 H/R. Day
Night has always been 47 H/R Night
But be aware that Diltiazem works within 2 hours! Care with the dosage as the specialist said that I could increase D to 360! Imagine what that have done.
I guess RF stands for radiofrequency ablation. Done overseas but doesn't seem to be done in NZ.
Hi JimJust a liittle update. I dropped the EP a line and really put pressure on him to prescribe something as a PIP beta blocker when I'm in a fast Afib episode. So he sent me a prescription for one with a short half-life so it doesn't linger after hopefully reducing the HR.
I was never on flecainide but propafanone which has its own beta blocking facility. My EP insisted I stay on it for at least three months post procedure to allow the heart to heal in peace. Last time round it took me 8 months before I finally weaned myself off.
Thanks for your reply Bob . I'm a bit stuck. I had Afib without meds and Afib with meds after the ablation. But today was pretty bad as above. I'm off to Normandy with family for a week and am already a little worried in case I have an episode in the middle of nowhere. I have just had one calm week on meds and feel inclined to continue for a week. Unfortunately I only have Flecainide Slow Release so can't even use it as a PIP which would be a good compromise. Rats and double rats. Just don't want to end up in hospital having the rate bought down when I could do it myself at home so avoid wasting hospital time.
Lily if your heart rate had a spell of dropping down to 35bpm, then there's no way you can take pills to take the rate down when it's high. I guess your Kardia told your that your heart did that!!!
I think if you took heart rate reducers now with your rate so low, it could be the end of you! Do as your EP has recommended and put that Kardia away. x
Yes Miss 🤣But I have to keep a record of today to send to him. But I 've had enough. I wish I could water the garden but will do it tomorrow at 6 am as it is 39 degrees out there with not even a gentle breeze. I will quickly check the water I put out for the bees and other insects and check the deeper bowl for the hedgehogs and toads etc . X
It is getting critical for bees. I have 2 rescue dogs, 2 rescue cats and 3 breeding mares who I rescued from becoming dog meat because they were too old to produce foals anymore. I put them at my daughter's who has a couple of fields. I stopped eating meat 32 years ago. Xx
I have a very shallow bowl with flat stones like islands in it. The bees ( or butterflies etc) can land on the stones and approach the water to drink without falling in. They do suffer from exhaustion and heat. My lavender has finished now. It is so great to watch all the wildlife on it including the Hummingbird moth as well as all the varieties of bee. X
Turns out the fumes here today were not from somebody burning plastic - though it certainly smelt like that - but was smoke from the Gironde fires that got to the Limousin this morning when the wind changed direction.
We lost our bees again a few weeks ago. We think the queen must have packed up laying as they just dwindled away. This was a swarm that arrived and took up residence in an empty hive last year. The previous bees did not survive the late spring frosts of 2021. It is too late now for another swarm but we might get one next year. We have loads of bumble bees and black carpenter bees . They love the pea family . It was only 34° here today but some b*****d has been enfuming the entire village burning something plastic. What sort of nutcase has a fire now of any sort after nearly 3 weeks with no rain? I just hope the smell has gone away by the time the windows can be opened to let in cooler air. Fingers crossed for the promised storms tonight!
Yup. I'm still on mine 4.5 months in - not in a hurry and EP is happy for me to explore reducing dose gradually in my own time whilst on contact with arrhythmia nurse.
Lucky you. I'm sure withdrawing all meds in one go provokes arrythmia as the heart sorts out life without them plus adjusts to the attack on it by ice or fire. After the ablation and off meds I had Afib . Four hours into an episode I took my meds. Two hours later I was back NSR.
That sounds really scary. It seems to depend on the EP, mine stopped my medication dead after ablation and said I wasn’t ever to take it again, I think because I was having episodes like you describe before ablation and the alternative to ablation was a pacemaker. I hope you don’t have any more drama 💓
What meds were you on? I don't mind coming off meds but would like some back up if I go into Afib - rate control as PIP for example. Getting a little worried about going on holiday on Wednesday.
I was on Propafenone (same class as Flecainide) and diltiazem. I am back on a limited dose of diltiazem - limited to avoid episodes of too slow heartbeat. I tried the PIP method but my GP didn’t like that, thought I would be better off with a regular higher dose, then added a BP medication as well but that arrangement has gone pear shaped.
EEK that sounds cery unnerving! Congratulations on keeping so calm. It'd unusually hot there too isn't it? Even if you're inside or knowledge thr shade the air temperature is hot and I'd guess post ablation you'll be even more sensitive to it. Keep well hydrated and pay attention your electrolytes too - I have organic coconut water to help with that. How weird you can only get slow release Flecainide over there!
Are you on the lowest dose? Trouble wuth slow releases is that there is usually a rise time, do they'll peak at say 2.5 hours in, and you can get a strong response from your body. I had this problem with Diltiazem. Once we'd reduced my dose to 'recommended for the elderly'
😀 things improved. The other thing you could consider if the Flecainide are not capsules (though they probably are as slow release) is to cut them in half with a pill cutter. I in fact do this with my Flecainide, which I take with Diltiazem. Obviously all has to be discussed with you EP. Problem is that 'recommended dosage' is statistics and people aren't statistics. Hope things stabilise for you!
In fact the Afib kicked in at 7 am - 1 hour before I usually take the Flecainide. So I had taken the Flec 23 hours before. It's in a capsule so can't take a mini dose. I'll just follow my EPs directions but feel like I'm winging it. How were things after your ablation?
Hi there.Had flutter ablation on May 16th and was taken off the very high dose of verapimil straight away.I actually thought my ablation was to be a fib but only flutter was apparent.Over the jubilee weekend when no cardiac nurses to chat to I had a couple of days fast tacky.I had no idea if it was flutter back as the kardia just says possible a fib.I have since learned the kardia only detects a fib not flutter.In answer to your question I self prescribed a low dose verapimil which after an hour put me back into sinus.Once bank holiday was over I got in touch with St Thomas's cardiac nurse and she told me I did exactly the right thing.Wouldnt it be nice if on your basic discharge notes they did mention a pip. Rant over lol.
Yes I can understand you completely. My blanking period was like what I imagine was an LSD TRIP. Highs lows feeling weird not wonderful unable to bend severe weakness breathlessness fatigue Trying to keep well in the head. Landed well out of NSR in April6 months post ablation. Stable Afib. Then had a cardio version last week and for a short time had super ventricular tachycardia and back to Afib. I’m getting my second ablation next week and hope that it is not like the first one. You’re not alone
Crumbs! What sort of ablation did you have and for what problems? Did you have those symptoms all the time after the ablation? I'm still hoping someone might answer my post who had similar blips but is now Afib free. From what I've read people who have a bumpy ride usually need a second ablation.
Hi Lili I hope your heart sorts itself out. There seem to be a lot of issues associated with ablations - a bit off putting. If your heart rate is low maybe you should avoid beta blockers. I find they make me tired and prone to fainting. Also they lower my blood pressure, probably why they make me so tired. I live vaguely with the hope that this a fib will disappear - fools paradise! Fatigue and extreme tiredness are the worse things I have to cope with but the cardiologist is not convinced that a fib is causing them. I wonder what the sucess rate is for ablations. I read somewhere it is up in the seventies, which is quite high. Maybe your heart needs time to settle down and then you will feel the positive effects of the ablation. Best of luck.
I'm far from thinking it has not been a success. I feel very optimistic but just interested to know what is "normal" during the recovery period. But it seems there are many paths towards the end of the blanking period. My EP said the success rate for my ablation with my PAfib ( with no other pathologies) was 80 -90%. Let's hope 🤞
You shouldn't be put off having an ablation. People who come on here to tell their stories and ask for peoples' experiences and help are the minority. As I think the veterans here Jean/Bob/Cdreamer/ Flapjack et al remind us the people who have had a successful ablation are not on this forum except the few who stay to help.
Have you seen an Electrophysiologist ?
Don't worry yesterday was the first time my HR was so low . I'm off all meds now.
Hi I take an anti coagulant, Edoxoban, everynight. I have tried bisoprolol and metopropol - both cause my blood pressure to drop which makes me faint. The GP has put me on propranalol. I tried it last week at bedtime - very disturbed night. I took one the next day and felt very nauseous for a few hours afterwards. My blood pressure went lower but I was ok. I shall try them again, maybe tonight, to see if I can build up some tolerance. I am due to see the cardiac nurse next month. No, I have not seen an electrophysiologist. It has never been suggested. Maybe ask the nurse next month.
Initially a flutter, which resulted in hospital treatment, but then it changed to a fib for which again, I have had some hospital treatment. My heart would go up to the 170s and with flutter stay there, but with a fib my heart leaps up and down. I have had the a fib for 2 - 3 years, cannot remember when it changed. Now my heart usually goes up to the 150s. It then leaps up and down sometimes for a few hours, other times for maybe 30 mins. I can go a couple of weeks when all I get is a shooting leap up to say 150, drop back down and then no more. I wore an ecg monitor recently for 2 weeks. My heart was v calm then, but the day I took it off, in the evening I had an episode which lasted a few hours. I do not think that my a fib is as severe as many on here, and the episodes I manage to cope with, but the tiredness I experience is affecting my life very badly.
HiIt is always the way that when you are monitored the heart keeps quiet .
I have had Afib for about 12 years. But latterly I was having episodes every 2 days. It always progresses. If it had become well-controlled permanent that's OK. But I always convert which is great . But going in and out of rhythm with high rates can enlarge the left atrium eventually which makes a successful ablation more difficult. So I thought I would go for it while my atrium is normal. It's bumpy at the moment but it's early days.
Why don't you try and see an EP (Electrophysiologist )just for a different opinion. I first saw one for one meeting 4 years ago. It was very interesting but I wasn't ready. But this year I decided to try. I just have to wait for the final outcome .
The fact that you feel bad because of your meds and your episodes is perhaps an indicator that a second opinion could be interesting .
What a harrowing experience! I'm very surprised you're being put on, taken off, and put on meds at such a fast rate. When my heart acted up as yours did a couple weeks after my (first) cryo-ablation, I met my EP at the ER, was taken to the lab, and cardioverted to get things set right again. Fast-forward to my RF ablation, my EP didn't take me off one med until nine months after. Maybe your doctor is too quick on the gun and should wait until your heart heals better before making such abrupt changes to medication.
Well in my case he felt my meds post ablation were the problem. I trust his jugement- after all he does 600 procedures a year and must come across cases like mine I suppose. I have however sent him a mail to ask if there something else I can take as a PIP to bring the rate down when it happens again. Someone (Jim?) recommended Diltiazem ( hope I spelt it right). I hope that I'm not left with the only solution being à hospital visit which would be silly. They'll just pump me full of a rate control drug. Could do that myself 😄
It would be nice if EPs could all agree on medication strategy! Nine months seems long to stay on meds after an ablation. I think it's all individual. I'll let you know how I get on. I didn't need to be converted my heart sorted itself out but I'm only 15" from à hospital if ever.
Your story sounds very similar to mine. It's like riding a roller coaster in the dark and the "friend"(ep) that persuaded you to get on in the first place rarely answers their phone.
Had my ablation in the US on July 13. After stable 24 hours, I've had one type of arrhythmia or another ever since including 3 episodes of afib. My ep suggested that I stay on my original treatment plan - 300 mg flecainide whenever afib experienced (PIP). Nothing else. With precaution to never take more than 300 mg in any 24-hour period.
First episode (July 14) of afib resolved itself in 30 minutes after flecainide (unusually fast). My wife and I then took the dog for a slow, short walk (<100 yds) and when I came back in the house the afib had restarted (never happened before). So then I just had to wait. Ultimately, I converted to a more normal rhythm and heart rate after I went to sleep a few hours later. (I wear an iWatch while sleeping to track what happens overnight.)
Second episode (July 16) occurred after day of heart rate variations from 50-90 bpm. Heart rate went slightly below 50 for a couple of minutes and I noticed significant breathlessness and then went up to 150 and stayed there. Did not take flecainide because it happened so fast and my heart rate doesn't usually go that high in afib. Continued difficulty breathing prompted a trip to the emergency room. Blood pressure was 170/140 and I was in afib. They gave me an IV with cardizem/diltiazem and that rapidly reduced my blood pressure. They also gave me a bag of saline solution because I knew I was also dehydrated. After 3 hours I stabilized and was released to home with advice to take 50 mg of flecainide in the morning to prevent afib. Had stable night and then took 50 mg of flecainide. One hour later went into this weird pattern of 50 bpm (sinus bradycardia) for 5 minutes and then 80 bpm for 15 minutes. That pattern evolved into pretty much random variations between 50 and 80 bpm the rest of the day. Just drank as much water as I could to try and flush the flecainide out of my system. Later noticed bigeminy pattern. Called my ep's after-hours line and was told to not take flecainide proactively anymore but call ep on Monday morning for further advice. When I called ep yesterday, he directed me to also reduce flecainide used reactively (PIP) from 300 to 100 mg.
Third episode (July 18) occurred last night after I climbed stairs to get ready for bed. Gave it 30 minutes to confirm it would not resolve itself naturally and took the flecainide. Had to get up to urinate several times during the night (typical for me) and then downed a liter of water at 4 am. Afib reverted to a more normal rhythm and rate while I was drinking the water.
Here's what I've learned so far...
1. My heart after ablation responds significantly different than my heart before ablation.
2. The ep's cannot predict the way my heart will respond to different medications after an ablation. (It is trial and error).
3. After an ablation as before, there is no way to predict how frequently an afib episode will occur or how long it will last and pre-ablation experience is a poor predictor (see learning #1).
4. There is no way to predict how long this period of instability will last. There is a 3-month blanking period to avoid additional procedures during that time period and most patients stabilize to some degree, but there's no guarantee.
If it is any consolation, know that there are many others around the world riding the same roller coaster in the dark. I wish you well.
Oh my goodness Lilypocket , that all sounds so scarey. I agree, it is most disconcerting when individual EPs have their own preferences and then don’t fully explain their choices to us patients. I am always much more confident if I am given the big picture even if it isn’t exactly what I want to hear. I must say that his explanation of flecanide being pro arrhythmic, does make some sort of sense . I think it and other similar medication can take AF and convert to either flutter or tachycardia. I have no idea why but I think it had been discussed on here before. I am now waiting for a phone call from the ecg department with an appointment. When the EP has seen the ecg he will tell me what he wants me to do. I have a kardia but not a 6 lead so that’s why I have to go and have it done at the hospital.
In the meantime, like you, we are going away to our static van for a few days so fingers crossed our breaks will do us some good.
Hi Lily pocket, I haven't had an ablation....yet....but do get very fast heart rates when I go into afib (around 170 BPM) often lasts for up to 48 hours. I was prescribed Flecainide at first with played havoc with me sending my afib all over the place with pro-arrythmia, could to this be a reaction to the flec do you think?
It doesn't work for everyone and can be pro-arrythmic. If you read the notice with the medication it does warn of Flecainide's pro- arrythmic properties.
What did your Dr replace it with?
48 hours at 170 bpm sounds tough. Hope you manage to bring those numbers down.
Well so far only one day like that but there is a long way to go. My ablation was one week before yours . But I do think Flecainide must assume some responsibility. 300 is a high dose ( the max dose). My EP feels it is not a good idea after an ablation as it is also pro-arrythmic. While I was not on it for the first 5 days after the procedure I had 2 Afib episodes but in between the HR was strong , regular and without other weird arrythmias. When I was put back on it after the second episode I had no arrythmia but the heartbeat was weird - slow, fast, ectopics, bigimy and trigimy all leading to what happened yesterday. The EP took me off the meds again . He said the Flecainide was causing problems. He said Arrythmia after an ablation is not the same as you had before but is caused by inflammation and the heart sorting itself out. The problem for me is he has taken me off the beta blockers too.
He seems confident about the outcome and says these episodes are no indication of failure or success in the first months.
I had a cryoablation of 3 pulmonary veins. I'm not sure why he didn't ablate the fourth vein. I think it is related to the fact that I had one lobe of my right lung removed due to lung cancer. The vein he did not ablate was the one that would have received blood from that lobe.
OK . I had a Radio Frequency of the 4 pulmonary veins, as well as a Box Isolation ablation. He also dealt with Flutter. I'm not suprised my heart is a bit disorientated! Why only 3 veins? Perhaps the 4th was too close to the esophegus?Lily
I talked directly with my ep cardiologist. He said his electro physical mapping of my heart when he triggered atrial fibrillation indicated that no stray signals were coming from that vein so he didn’t ablate it. There hasn’t been any blood flowing through it for the last 10 years.
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