Ablation scheduled

Don't bottle it. I have yet to meet anybody who wishes that they did not have an ablation. AF ALWAYS progresses so best to get rid before it gets any worse.

Hi Bob I'm going for a 2nd ablation end of January 1st one lasted a year had PAF 4 years there are two questions to ask if you don't mind. Since you have been AF free have you been up in a plane and do you take any blood thinner?, the reason for these questions is I went into paf a year after my ablation when I flew back from Thailand with my wife and have stayed in ever since.

Do you have to stay on blood thinners the rest of your life? at present I am taking Rivaoxaban which I don't like taking and have only gone on recently ready for the op. My CHAD score was 0 as I am still active in sport and this was the reason I was not taking thinners.

Have a good New Year Bob

Geza

HI Geza, If you mean anticoagulant (they do NOT thin blood. merely slow the clotting time) I chose to stay on warfarin for life since there are many EPs who believe that successful ablation does not remove the stroke risk. With my age and blood pressure (even controlled) I have a score of 2 so no contest.

Regarding flying, yes several times maybe five or six trip away to races. Also many times whilst in AF before the ablations. Flying should not be a problem even if you are in AF . I understand your fear but lets be honest, the first didn't work regardless of when the AF came back. Neither did my first! When you go the ablation route you should understand that it may be an ongoing treatment rather than a quick fix although there are some lucky people for whom it is.

Happy New Year to you and yours.

Bob

Thanks Bob your as good as an EP on this site

Have a good new year

Geza

I am in permanent af...I have been for several years. On the whole I'm pretty ok and take Apixaban. BUT.....should I consider an ablation....which type..and who to do it...is the late 70s too late....and...I may not begin to' feel the need' for for another few years.Any advice most welcome.

The type is not up to you. This would be the choice of the EP as to which he thinks would be best in each individual case. Cryo is good for simple AF whilst RF is more complex and more flexible in what can be achieved. Long term permanent AF is much more difficult and I think unlikely to be considered for ablation due to the low success rate. I am not sure age has much to do with it. More about general health of the patient.

Thank you Bob. That was a very helpful reply.Thankfully, my general health remains good but as a planner and a plotter I am always wondering...what if.

Why not get an appointment with an EP and then you will find out what are the options in your case taking into account your health, history, etc.

Thanks PeterWh.Thoughts of an ablation have only very recently began to pass through my mind...but yes, your suggestion will be the first line of 'attack'

When I saw your post I thought that way you could just focus on what EP said were possibilities for you.

hi bob

I had a pacemaker fitted in march 2015 (triple wire) because of the number of cardioversions. Went into AF in December 15 and had to have another cardioversion just before Christmas. saw my EP last week and she recommended an ablation in Feb 15 to end me going into AF and then have a second ablation later. I feel well with the pacemaker but if I sleep on my natural side (right) I get uncomfatable thumping in my chest this goes away when i lay on my left side. I always thought that once you had a pacemaker fitted this would help to get rid of AF. have you ever heard of anyone getting the same symtoms, ( ie thumping in the chest )

My understanding is that a PM will not stop AF, merely cover it up by maintaining a regular ventricular rate. I have a good friend who has had AV node and PM and still gets AF despite four ablations.

I had my ablation over five years ago and no problems. I know it could come back but I'll deal with that when and if it does.

I was very scared pre=op, I think that's normal. I was given an anti-anxiety shot which took care of that. I have heard the earlier you have the ablation the more effective it is.

It is wonderful to get your normal life back. I'm happy to answer any questions and I wish you total success.

I know what you mean about being scared pre-op. Mine is coming up this Sunday and I'm absolutely bricking it to be honest!

We are close, mine is Jan 27th....same thoughts/feelings as you as I am quite active and I'm concerned if I will regain mobility etc afterwards but we must listen to those who have gone before, it will get worse over time and surely to tackle it early rather than later makes total sense. Best wishes.

I assume there must be some kind of limit on ablations so I took the view that if I was offered one without even asking I must 'deserve' it! I had mine two weeks ago and I still don't feel great but I'm pleased I had it because it gave me the chance of a better quality of life. It was a hard decision because I felt I was doing OK as I was but I had to trust my cardiologist and EP who warned me that wouldn't last!

Best wishes to both of you.

Had my 2nd on the 19th, are you still having small bouts of af?

With my first back in May....I didn't afterwards, but the af came back hard in October.....

I have not noticed AF as such, just a few ectopics, but when I lie down I get a run of something, a sort of 'falling downstairs' sensation for a few seconds. Bit difficult to catch on Alivecor, but I am trying not to obsess! I have an oximeter and check my HR with that.

I am very much hoping not to need another ablation but I'm trying not to think of that!

I pray this one fixes it....at least for a few years....second was easier than the first since I knew what to expect...

I think back in May it took a couple of weeks before I felt like i wasn't having any AFib .....was great none at all for almost 3 months....

I was told that if you are actually in AF then HR on an oximeters is as much use as a chocolate fire guard. The true number could be double that shown or equally much less. Wrist monitors are much the same, even well known makes. I did a comparison between my AliveCor and wrist monitor and the error range was I think anywhere from the wrist showing 60% higher to wrist showing 30% lower than true value. Unfortunately the difference is inconsistent (ie variable, sometimes low, sometimes high).

A cuff monitor suitable for use for someone in AF is more accurate than oximeters or wrist monitor and usually than general cuff monitors.

AliveCor and AF don't align 100% because of the nature of AF but correlate pretty well. For consistency and comparison against my norms, I use AliveCor readings for HB and my cuff monitor for BP.

Hope that doesn't confuse.

BTW I was told by SA consultant that even the oximeter reading is not 100% accurate if you are in AF but is a reasonable guide as to SpO2 level. Originally I had thought it was accurate.

You might find this interesting

AliveCor Heart Monitor and AliveECG app for detecting atrial fibrillation

NICE advice [MIB35] Published date: August 2015

As you say, an oximeter is no use for HR when in AF. My husband's blood pressure monitor detects gross AF and the rate shown was the same as the hospital monitor which is also innacurate I believe.

Simple answer, if in AF and you feel rubbish your heart is beating too fast for YOU and *** the numbers.

Thanks for that but yes I had seen that when it was published.

You are correct that some hospital BP monitors are wrong, mainly because of the fact that they are not so new or are the standard ones. Heart wards have ones suitable for AF and where ablations are done of course you get hooked up to heart monitoring unit.

Your last paragraph is too true. One time when at the GP's my HB was in the approaching 120 and she told me that if it didn't drop then they would be calling an ambulance. My response was but it is only 😀 120 and that is not so high. She said it may not be that high for someone whose normal HB is around 100 but for you whose normal is in this 50s it is getting high. Anyway I had to wait 15 mins and the nurse retook it and did an ECG and the GP was happy to let me go!!!!😀

Best of luck to you....Vent on here as much as you like...your not wining ...I reckon everyone has some apprehension before the ablation .....and as BobD said AF will get worse over time without some sort of intervention....best wishes

I'm having a CRT/Biventricular device implanted on January 25th as well. I have also struggled with the same thoughts that maybe it's not that bad what I'm experiencing. But it's time. I am trying to find as much info as I can as far as what it feels like and what I can expect. I will keep

you in my prayers.

Susan

I've had two ablations, the first for flutter and the second for PAF. I was having arrhythmias many times a day, but my heart rate didn't rise and they didn't last long. The only problem was that when one lasted more than 5-10 minutes my physical performance sagged. I could be riding my bike at 140 bpm and suddenly have no energy. Then I'd bounce back. That sort of thing. So I had the second ablation in order to restore my physical and athletic functioning. The procedure was successful; it was done last May and I've had no arrhythmias since then.

It was a big surprise when I developed an autoimmune disorder as a result of taking flecainide. My advice to anyone considering an ablation is to go ahead and have it done, but avoid flecainide if at all possible. You don't know how it will affect you. I'm a very rare case, but it takes only a single case to disprove a rule, such as "flecainide is safe."

After an ablation you'll probably be prescribed flecainide 200 mg/day to prevent breakthrough arrhythmias (doses less than that have not proven effective for this purpose), and maybe diltiazem to control your elevated heart rate. My preference was to let the arrhythmias happen, otherwise I'd never know about them. And my pulse was only about 76 (normal pulse 56-62). So none of those issues bothered me. My cardio insisted, and I trusted him. Net effect: instead of full functioning, I'm now virtually disabled.

Bottom line: don't be afraid of the ablation; be afraid of the drugs.

Hi Kodaska, may I ask which autoimmune disorder you developed? I am in remission from Dermatomyositis, diagnosed 1997, and I also take flec. I am aware of advancing muscle weakness but put it down to ageing. I fight it by cycling (recumbent) every day. JanR

The neurologist defined it as a "drug-induced autoimmune disorder." That's it. He said the only way to get a better definition would be to take a biopsy, and that's not recommended because I wouldn't live through it.

Flecainide suppresses activation of the brain's immune cells (microglia), not the cells that operate in the rest of the body's immune system. So it affects the central nervous system. If there's some background infection that the microglia are keeping in check, suppressing them allows it to come out and play, creating symptoms (in me, dizziness, fatigue, paresthesia, shortness of breath, bleary eyes, and a few other little delights). When flecainide is stopped and the microglia come back online, they beat back the infection but the damage remains. Or maybe they have an ongoing battle with the infectious agent. Or they see the damage as foreign and attack it (as happens in multiple sclerosis).

In any case, my symptoms have changed very little since I started taking flecainide, and I stopped it in mid-June.

I've had an MRI and blood tests for immune disorders that leave markers. Nothing. Boring. Everything normal.

Really getting scared after reading your post. I have been on Flecanaide for over ten years and there's a definite decline in my nervous system. I also have muscle weakness as you describe besides a sensation of unending nerve pain in my legs and feet. I can't get any answers from my Dr and now after reading your post I'm suspecting the Flecanaide. Any opinions from my fellow A Fibbers would be so appreciated. I'm really afraid that this drug is toxic.

I am due to have ablation late January. I am basically very fit, but have had persistent AF since Feb. your comments are very helpful.

Even though I have a partial disability (see above) I'm still able to work at a fairly high level. Yesterday I cleared snow for three hours, today for another hour (much harder than yesterday since it involved a lot of ice). It helps to have a heart like a horse and know how to lift. Do everything you can to maintain your condition!

Much to my surprise I was taken off the Propafenone and Diltiazem I was taking before! I was told not to take either of them again without taking professional advice first. Not sure why but I know Flec and similar can be proarrhythmic. Clearly my EP is very confident.

Very interesting that you say you developed an autoimmune on Flecanaide. I have been on this drug for over ten years for A Fib and recently EP increased my dosage to 300 mg daily. With this increase I know the side effects are getting worse.i have increased tingling in my limbs and the brain fog is horrible. I had an ablation for flutter three years ago and that was a very simple procedure. The AFib continues and I'm contemplating an ablation. I think I'm more afraid of the Flecanaide than the procedure. Please tell me more about your side effects on Flecanaide and what to expect with the ablation procedure because I'm very afraid of both. Thank you for any advice.

The ablation procedure is described very well on a number of websites. You might want to go over it in detail with your EP. Ask whatever questions that will help you understand the procedure itself and any risks it might entail. The more information you have, the fewer handles your fear will have to get a grip on.

As for flecainide, if you stop taking it the side effects should go away. It has a fairly long elimination half-life, so you won't notice any change for about 4-5 days.

Since you've been taking it for a long time, your brain's immune system may not have been cleaning up the various debris it usually takes care of (e.g., dead cells, bits of DNA, other cell parts and waste products). It's possible you have some damaged neurons, but it's impossible to tell. You'd have a better idea after stopping the drug. In any case, if there's damage, there's nothing you can do about it.

I described my side effects above in response to jan-ran. They come on shortly after I get up in the morning - doesn't matter when - and after that they're completely unpredictable. I have no way to predict how fast or strong they come on, how long they last, or whether they'll come back after settling down. My typical day involves 2-5 hours of strong symptoms (level 5 and above), and 4-10 hours of symptoms at all levels. Dizziness comes first, then fatigue, but bleariness in the eyes seems to operate independently, and less often.

I've had strong symptoms as long as 13 hours in a day (rare), as well as days with no symptoms at all (not as rare but still unusual).

Today is one of the good days. I think it's because I approached the day in a very positive frame of mind and got outside to shovel snow right after breakfast. I'm finding that an upbeat frame of mind minimizes and sometimes eliminates symptoms. This is consistent with the role endorphins play in Parkinson's and Alzheimer's.

Well, that's enough for now.

Get all the info you can and realize that your fears are not helping.

Thank you so much for your reply. It's such a great feeling to know that there are others to speak to. As you suggested I'm going to get as much information as I can and make a clear decision about having an ablation. I'm just more afraid of what the Flecanaide is doing to my health than the AFib. I would like to take a chance of pip and see how I feel. Thanks again and I'll keep you posted.

Gracey. Very good info and booklets on the main AFA website.

Thank you I will do that.

Just do it!

Go for it. I had my ablation on 15 January this year and haven't looked back. I was getting AF episodes 2-3 times a week and was on 150mg Flecanide and 5mg bisoprolol daily. I have had 5 episodes in a year and not looked back.

I would have another without any hesitation. Wishing you all the best

I met my EP and got a cancellation for an ablation within a week of seeing him. No time to agonise and worry but no time to prepare myself or do any more research. Am I doing the right thing, I kept thinking? In the end, they are the experts – I'm just a layperson who is good at Googling.

I'm 15 days post ablation and all good. I was a bit tired the first week - but had Christmas to contend with. My advice would be don't worry. At my request, I'm only on Apixaban now and hope to drop that when I see my EP on the 19th.

All the best

Which hospital?

Harley Street Clinic

I feel exactly the same. Am waiting for my ablation and thinking is it necessary as I'm ok at the moment but that's because it's controlled by meds so have halved my meds to see how I am and am considering coming off them altogether to remind myself how it used to be and then make my final decision.

I feel for you cos I know I will be petrified when my date comes through.

Good luck and I hope all goes well.

I admire your data-based decision-making. No knee-jerk (or other hyphenated) reactions for you! Please let us know how it works out.

Will do Kodaska. Am on day 5 of halving my meds and actually feel so much better. More energy, no hot sweats and sleeping better - and best of all, the ectopic beats have gone and my heart is beating well at 65bpm as apposed to 45bpm when on full drugs and no AF - yet.

Can I ask where you are? When you mention snow I don't think you must be in the UK because we have got floods everywhere and it's ridiculously mild.

Very mild - hit 17oC in the south but actually only started raining about two hours ago and is only light rain!!!

I'm glad to hear you're feeling better. Since your symptoms are abating, it seems they're caused by the drug and not by an autoimmune response. That's very reassuring.

I'm in Wisconsin, USA.

If it isn't that bad now, trust me it will get worse over time. An ablation is the only real fix for AF at the current time so my advice is go for it !

I had my first in February this year and I'm lined up for a second one in the coming months. The hardest part for me was trying to rest and not to worry every time I felt a thud in my chest. My expectations were not set so high by my EP and he did state I may need a second procedure, which I'm lined up for. If you are really serious about trying to nip AF in the bud, then I would suggest the ablation route.

Hi Jason,

Nice to know you have made your decision to have your 2nd ablation in due course.

I wish all the best and keep in touch.

Kind Regards

Barry