On flex 15 years EP wants me to cold turkey iff

Since 1-1-04 I’ve had AF. I had a wonderful run of flec with almost AF free until lately with the sudden death of immediate family and the threats for 10 days of a bad person who was texting and calling he would come over with his gun unless we emptied $@ an ATM. Elder abuse. Police didn’t even drive over, begging them kept putting me in Afib...I got a steady run of AF now every 12 days and now yesterday daily and was advised to increase flecainide from two 100mg to 300mg a day if I came to the hospital yesterday after 5 days to see if I would get v-tac or worst during a stress test.

I did, rushed to ER with both af and v-tac from treadmill. After cardio version my HR was 23-low 30s.

That was yesterday and I am in cardiac ICU with HR in 37-40s.

Advise is to cold turkey flec. It’s too dangerous now to wean.

Jackie always said to wean. I consented to an upcoming freezing ablation. Only 50% successful. He does 2/week. He said he has good hands.

What are the side effects to expect if cold turkey flecainide? 22 hours off of flec and I still can’t stand. Just a constant pee. Mostly in irregular sinus with short bursts of Afib.
Susan
Thanks

People stop flecainide cold turkey all the time. I've done it several times myself. It's common practice and there's no valid medical reason to wean. If your EP believes flecainide has become dangerous for you -- and yes, it can do that -- then I suggest you take his advice immediately.

I have done research on Flecainide, and I have never seen where it is said it cannot be stopped cold-turkey. Flec is one of the Anti-Arrythmics that is "rate-dependent" meaning the faster the HR, the more pronounced the effects of the Drug.
So being on a treadmill could have increased the effects of the Drug. Also at rest, the Flec lowers HR in some people. This may be what is causing your slow HR, so getting completely off of it would seem correct. The Drug has a half-life of 12-27 hours, meaning that the drug will gradually wash out of your system over several days.

Flecainide is a Drug that can be seemingly well tolerated and therapeutic at 200mg/day, but life threatening at 300-400mg.

I am like you as far as my tolerance to the Drug. 100mg twice a day no issues, but going much higher produces bad effects. Just last night, I took a single dose of 200mg at once, to try to convert out of AFIB, I failed to convert, and my HR went from 60-80, down to 40-42. I stayed up for 3 hours not wanting to go to bed, as I knew my HR would have dropped even lower. Fortunate for me, the Drugs exits my system fairly quickly, and the negative effects reduce after 4 hours or so.

Hopefully you will feel better by tomorrow.



Edited 1 time(s). Last edit at 08/22/2019 05:19AM by The Anti-Fib.

I just got home from 3 days in ICU cardio unit. I didn’t know that taking the 3rd pill during Afib (I was on 100-2/day) would lower my HR. I figured repeated cardio conversions 3 a month for 3 months followed by a 4th 12 days later caused the 44 HR that never increased. I was taking advise from my cardiologist and ER staff to increase to 300 (100-3/day), but they wanted me pass it by my EP.I called up my EP who was so against it. So I asked my “trust you with my life” long term NY cardiologist (I now live in CA) his opinion since he has treated and has known me since 2006. I explained his colleague and friend the EP he recommended me to see since I am in CA was against the increase because I lost 60+ pounds since my first AF in 2004. I was advised by my NY cardiologist to try the 3rd dose after I sent him my prior three EKGs done in the ER.

I still wanted an EP to confirm this important decision so I went to Cedar Sinai, met a caring kind doctor who I immediately was impressed with. He spent an hour on my history by asking questions nobody has ever asked before. He suggested I do a 5 day controlled test of 300x day and do a treadmill on the 5th day to see if I can handle 300. He got his results in 2 minutes when I began v-tach for a short while and then Afib. He was so caring he left his clinic and patients and while an ambulance drove me around the corner to the ER entrance, the EP met the ER staff and was involved in decision making until I was out of danger.

So today I called my old EP and gave him an update. He was upset to say the least. He told me he has never told any patients “I told you so “ until me. Several times, saying he has decades of experience and the new EP should had known better when I had a 44 HR. He said good luck with my new dr and ended the call.

So here I am feeling like a fool, the regular cardiologists (4) who make rounds on all the cardio icu patients shook their heads and all suggested a different EP. So I got pressure from 4 cardiologists shaking their heads and saying this other EP is great.

I didn’t take it well and started to cry. I usually don’t cry but I am clueless. I just ended the call from my prior EP. Thus my reaching out to you guys. My gut feeling is the new EP. He is very cautious he says and will freeze not RV and use a thermometer so if my esophagus gets cold he will stop and continue another time. He wants it done next week or latest the following week.

Has anyone heard of Dr Noori at Cedar Sinai? He is who I was impressed with. The others suggested dr Michael Shehata @ cedars.

Any feedback if you heard good or negative would be appreciated.
Susan

Glad to hear you are out of the Hospital. Should be nice to be home after being stuck in the ICU for 3 days. What is your HR now? As for the repeated Electrocardioversions causing a low HR, I have never heard this. ECV's are very common, and I had had many of them, and conducted much research on the issue.

The whole idea of going from 200mg/day to 300mg/day + a Stress Test seems a little to aggressive a jump in dosage to me, given that you are an elderly Lady, and perhaps don't weight that much? Flecainide has what they call a "Narrow Therapeutic Index" in Medical terminology, which means the difference between a therapeutic dose and a larger dose with adverse effects is small. It is better to find this out there is the Dr's office, then out in life under a stressful situation.

On the positive side, you got an EP to spend an hour with you? That is impressive? The longest I ever got with 5 of them was 30 minutes.

My HR standing is 67, sleeping 47. Much better than 23! I have ortho-statin(spelling?) in which I am very dizzy when standing with higher HR and BP than sitting or laying. They are holding my water pill because my output is much more than my input the last 3 days. It’s a continuous big pee a lot of Afib gets upon AF but I still have it. My BNP test is elevated.

I’m not skinny, normal-123#. I used to be obese at 187 so the original dose at that weight was appropriate- and am 5’ tall and 67. When I lost weight I tried 150/day for a week but went into AF after 3 years of NSR so I went back to 200/day. Today I am 3.5 days in NSR :-) without AF and without flec!

Love being back home. It’s a luxury to sleep and shower.

EP told me he suspected my frequent AF to be caused by my 4 month gap of stop using my cpap machine. I’m back using it.

I don't understand why that "trust you with my life" cardiologist was offering medication advice to a patient he isn't actively seeing. Worse yet, he gave you advice that contradicted the doctor who is treating you. That was irresponsible, unprofessional, and dangerous. I strongly urge you to quit trusting him with your life.

I'm glad you came out of this okay, but you had a close call. Flecainide-induced v-tach is very dangerous and could easily have deteriorated to v-fib, which is fatal. I would stick with one EP at a time (and only EPs, not cardiologists). If you don't like them or their advice, see another one, but don't take treatment advice from multiple people simultaneously (and they should know better than to offer it).

That’s why I am frustrated for my bad decision and cried. Does a short run of v-tach cause permanent electrical remodeling that can come back since I stopped the flecainide induced v-tach? I’m worried my next AF it could return.

Quit beating yourself up and just chalk it up to experience. The brief run of v-tach will do you absolutely no harm. It was dangerous while it was happening but it won't leave any lasting effects.

Good advise. Thanks.

That was interesting and glad to have read it. I worried about weaning myself off flecainide without Dr approval. But i was amazed at just how miserable it was for me until I was off of it. Wow !

I have been on 100mg of flec twice a day (and 25mg metoprolol, lisinopril, and warafin) since 2008 when (rightly or wrongly I agreed to a pacemaker because I had fainted when converting back). Knock on wood, I have -- so far -- only had about a episode every year or two. One may have been tied to Lymes Disease I had in 2015.

But because an episode does me in so ( I am 73 luckily in good health at 150 lbs and try to get in exercise regularly), i really weighed an ablation last December when my last episode walloped me. Shannon proved a great resource as is this informative site.

Best to all who deal with Afib.

being off flecainide was day and night better. My major grip was not being able to sleep when on Flecainide. Now I sleep like a baby. My cardiologist took me off the water pill, lowered in half my blood pressure meds and reduced my 25mg 2/day to 12.5mg when needed each day as long as my resting HR is 60. I am more peaceful without it. I looked it up on drugs.com and a side effect is being nervous. Going cold turkey was not symptom free. my heart rate is very low resting [mid 40s] to as high as 91 standing. I am orthostatic and dizzy since being off.