Coming Off Flecainide.

[MKG50]

Thank you so much to everyone who replied to my post re. Flecainide and Apixaban. So helpful when you're struggling.

Since coming off the Flecainide last Monday I have checked my Kardia frequently. It always reports NSR. My EP and GP insisted it was ok to come off Flecainide cold turkey. I am very drug sensitive and questioned this but in the end did as they said. I really believe that a lot of the side effects I am suffering now are withdrawal symptoms. I have searched posts on here and there are several, some from a few years ago, who identify with this and also suffered from rapid withdrawal. I am seeing my GP in 10 days and will discuss it with her but I'm sure she will dismiss it totally. Many years ago I had to withdraw from Diazapam. A total and absolute nightmare. This was also dismissed by my then GP as all being in my head but it is now recognised that a long and painful withdrawal from Diazapam is a very real thing!

So if this is withdrawal from the Flecainide I shall wait it out and hope it subsides sooner rather than later.

Thanks again to you all for the support and I wish you all good health.

[mjames1]

What are your symptons? Diazapam (valium) is notorious for withdrawal symptons and so are beta blockers. Flecainide is not.

On the other hand, if Flecainide is controlling your arrythmia's, including ectopics, then yes, they might come back when you stop taking it, but that would not be withdrawal symptons in the sense you are using it.

Jim

[MKG50 in reply to mjames1]

No, Jim, I'm not having arrhythmias or ectopics. I have breathessness, dizziness, brain fog and slight tremor feeling. My BP drops (rarely gets near 120) and so does my heart rate ( low 50s) so feeling wiped out and generally unwell. Given that it started soon after stopping Flecainide it certainly feels like withdrawal to me.

[mjames1 in reply to MKG50]

I told you what the literature says, but I also believe the body sometimes knows best

I see no harm in weaning gently off Flecainide and in fact my ep gave me a one week weaning protocol after my ablation.

Jim

[jeanjeannie50 in reply to MKG50]

When in hospital once and my blood pressure was low, a nurse advised me to drink water to bring it back up and it worked/

Jean

[stoneyrosed]

I came straight off Flec and suffered no reactions. Everyone different of course.

[Thomas45]

I had been on 300mg a day of Flecainide for 10 years and just stopped when told to as I was in persistent AF, now agreed as permanent AF. I had no withdrawal symptoms.

[secondtry]

My cardiologist knows very well I would dearly like to come off the Flecainide. However, because I am stable AF free I guess he thinks rocking the boat has more downside on his professional reputation than upside. He doesn't even discuss what has happened when other patients have stopped (presumably he has some) and whether they have gone cold turkey or followed a gradual weaning off.

I appreciate it is a difficult decision to go against a medic's opinion but whether I was sensitive to drugs or not after a long time on Flecainide, I would need convincing why cold turkey is better than a gradual wean; the latter seems just common sense to allow your body to adjust.

[DKBX]

Had to stop flecainide due to LBBB and went back into Afib requiring yet another ablation.

[Budken]

I was told to stop taking flecainide, by my German Cardiologist. I asked about weaning off, and he said it was not necessary. I experienced some short outbreaks of Afib immediately after stopping, but that was it. I don't think it had anything to do with withdrawal but was simply the fact that I was no longer taking an antiarrythmic. That was five months ago. I regret to say that a recent episode, did not stop, even after PIP. So my regular Doctor told me to once again start taking it, although only a low dose. It remains to be seen how this works. I really liked not being a slave to this drug, that does make my energy level suffer.

[ColbyLH]

I have been on flecainide for7 years after an initial 24,000+ PVCs/day…(50mgx2/day)..Do not like the dizziness, fatigue, tingling in hands, etc but PVCs are less than 100/day and so far, no afib! I asked 2 different Electrophysiologists about stopping and they both said cold Turkey or gradual weaning…It made more sense to try weaning and I did, but within a week, I started having more PVCs and feeling faint/dizzy…Decided to go back on it as it scared me….don’t like it much, but alternative of major afib or other issues and having to have an ablation is a lot more frightening than the enemy you know…

[Banquo]

After my blanking period of first ablation, i was told to go off Flec cold turkey as well...according to my EP it's sort of a "either it works or doesn't" at that point. I started having AFib episodes within 10 days, so then went back on the meds, and am now on even a higher dose of Flec waiting for my ablation number 2. Just like you, it made me wonder about weaning off the meds instead of just stopping them. It makes sense, with most drugs, when you've been in them a long time. However, my EP who's been doing this over 2 decades says it's fine just to stop .. so I guess it becomes a trust issue? I will ask more adamantly about coming off cold turkey next time .. but really he assured me just stopping after the scars have statistically had time to heal is ok. In my case ..I'm questioning the 3 months blanking and that maybe I healed slower .. maybe I needed a bit more blanking! Again he said prob not the case...the first ablation just didn't work.

[Jmc43]

Like some others, I stopped taking Flecainide cold turkey about six months ago right before I had a pacemaker implanted, and had no side effects. I still have it as a PIP, but have only used it a couple of times.