Ablation scheduled

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

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.

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 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!

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.

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!

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.

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

Harley Street Clinic

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.