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Flecainide and Dilitiazem. What are your side effects?

mjames1 profile image
21 Replies

Two weeks ago started taking 50mg of Flecainide twice a day plus 120mg of time release Dilitiazem once a day. First week a little rocky with several afib episodes and runs of ectopics (PACs and PVCs) that were terminated within 1-2 hours with an additional 50mg of Flecainide. Last week no episodes and also no ectopics except for one day when ectopics started up so I took another 50mg of Flecainide and they went away. (Ectopics tend to precede my afib episodes.)

I'm tolerating the Flecainide and Dilitiazem fairly well most of the day, sleep well, but usually around 6pm I sometimes start feeling a drugged feeling in my head, sometimes it turns into anxiety. And sometimes, at around that same time, I get extremely tired and have to lie down. Then by 8-8:30 back to normal.

Wondering what kind of side effects anyone else on this drug combination has? Also, wondering how many found 50mg twice a day effective or if they had to increase the dose?

I started with Paroxysmal afib with episodes around every six months which self terminated by themselves within 48 hours. All I did was control the rate with dilitiazem and small dose of Metoprolol, a beta blocker. But last couple of months it evolved into Persistent Afib with episodes weekly and as long as 12 days, but still terminated by themselves. That's when I started the Flecainide and Dilitiazem.

BTW I take the daily dose of Dilitiazem at 8:30 in the evening and my last meal is usually at 3PM. Thinking of eating later to see if that might make a difference with the side effects around 6pm.

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KMRobbo profile image
KMRobbo

I took flecainide 2 x50 and diltiazem 1 x 200mg mod release daily for 10 months. The only time I went into afib with the flec, was the day after I missed the evening dose.

However I had problems with the diltiazem . Slight breathlessness, especially noticeable on stairs, when i would suddenly start panting, excercise intolerance, max hr 137bpm., brain fog , and short term memory issues. These seemed to get worse the longer I took them. I do think I was overprescribed at 200mg. I tried 120mg for a few weeks and they did feel a bit better, but still not great. The Breathlessness was wierd. It was as if when you increased your movement your body did nort adapt to the increased exertion and then suddenly realised you were oxygen starved and suddenly you were panting.

On the plus side after my afib ablation I developed re entrant atrial flutter. The diltiazem did rate control me at 140bpm so did its job in that respect. The rate could have been a lot higher.

mjames1 profile image
mjames1 in reply toKMRobbo

Hi KMRobbo, Thanks. Yes, it is strange exercising on dilitiazem. My HR walking usually stays below 100 and when it used to go up to say 130 lifting weights, now it's around 110. May I ask how old are you as exercise heart rate can change with age. I'm 74. Also, did you take the flec and dil after your ablation or before, or both? As to the breathlessness, I was never panting, but then again my heart rate didn't go up as high as yours, but I might have experienced that delayed action once or twice but hard to say because it also could have been seasonal allergies that sometimes make me feel like that or even anxiety. Did your doctor suggest another ablation for your flutter?

KMRobbo profile image
KMRobbo in reply tomjames1

I am 61 but was 57 -58 when I was on Flecainide and Diltiazem. I used to run and cycle just to keep fit , 10- 12 miles /week running 25-50 miles cycling. Some periods 1 hour circuit training. And I kept it up when I had Afib. I was 100% sure my AFib was not exercise induced.

All the Rate control meds I tried except Verapamil impacted exercise quite significantly (and Verapamil was odd as it is the same family of CCB as diltiazem). But if you think about it they are there to control the heart rate, so it should be no surprise. The CCB doesn't know you heart is racing because you are running, rather than its induced by AFIb ( I dont think - I am not medically trained!). When I was running I used to average 150/155 for 6 miles if I tried a bit, so the 137 limit was a substantial reduction and it was quite agonizing getting to 137. I persuaded a cardiologist to put me on 120mg Verapamil for a while which was better and I could get to 142 ish which is not a lot different but I could run more freely. The weird panting was as I said it like my heart rate didn't increase with the extra demand on it then sort of realized and tried to catch up with itself, It was strange. when I was running I had to start slowly until my heart caught up.

I took the flec/diltiazem from July 2017, after my 12th AFib attack in 22 months resulted in AFib for 8 days mostly at 165-195 resting, and was in hospital for 5 of those days, eventually cardioverted by flecainide infusion in the CCU of my local hospital.

That's when I decided to have an ablation. The high dose of diltiazem was owing to the difficulty the hospital had in getting me back in NSR when in AFIb. (my local hospital is not an AFib specialist - I went else where for my Ablation.)

I developed the re-entrant flutter 9 days after my AFib ablation. There had never been flutter on any of my ECG traces and not when I was in the lab for the PVI Cryo ablation for the AFib. My EP believes that the flecainide promoted the flutter. Except for the high HR I was asymptomatic in AFib, with flutter I was gasping for breath just walking into the kitchen to make a brew.

As I said my HR was always 140bpm owing to the diltiazem. So walking put more demand on my system, but my HR did not move so I went breathless. Perhaps without the diltiazem my HR would have increased and I would have been less breathless but my HR could have been MUCH higher.

My EP arranged another ablation exactly 4 weeks after the first. So basically I spent February 2018 lying down with 140BPM HR just reading or listening to music!

It did not do my heart any harm but I had quite a general loss on muscle from my inactivity. When I got back to exercise post flutter ablation I couldn't walk 4 miles never mind run it. Took a few weeks to get back running.

I have mixed feelings on the Diltiazem I never felt good on it and 4 to 6 weeks after I stopped taking it I felt SO much better mentally. But it certainly did its job during the flutter keeping a lid on my heart rate.

mjames1 profile image
mjames1 in reply toKMRobbo

KM Robbo, Quite a story. Wondering how you got your HR up that high. As you know, your max HR can decline with age, so at 74 mine is lower than at 57 plus I'm just walking/hiking mostly.

So did your second ablation take care of your flutter? What is your situation now in terms of medications? I'm surprised the dilitiazem wouldn't get your HR below 140 for a month. Before Flecainde I would control my rate in afib with mostly diltiazem but I would add a little of a beta blocker (Metoprolol) which helped get it even lower to 80-90 resting and 100-110 walking about.

KMRobbo profile image
KMRobbo in reply tomjames1

Yes no flutter or A Fib since the ablations. I haven't taken any drugs since May 15 2018. I get a lot of Ectopics but although they sometimes are irritating they don't stop me doing anything and don't cause other problems so I just ignore them. That was difficult 3.5 years ago but not so difficult now. Worrying about them makes them worse IMO -palpitations and Ectopics are closely related if not the same thing. (not medically trained)

Although I don't really understand it, A Flutter is much faster than 140: the atria can be beating at up to 350 BPM , however you can have a conduction ration of 1:1, 2:1 or 3:1. So the 140, I think, is the end result of being rate controlled down from the 350 at a 2:1 ratio, hence, my happiness with the diltiazem from that respect!

My highest recorded HR was running in Afib which was 243. (yes, I stopped running when I realized it was so high.) The reason I was running was that I found out that running for 8 or 10 minutes used to get me out of AFib, into NSR. That trick worked on 8 or 9 occasions but stopped working in July 2017 on the 12th (ish) Afib attack.

I had major problems with Beta blockers, 1.25mg of Bisoprolol put me to sleep for 4 or 5 hours in 40 minutes of taking it, and I was not well when I woke up. My heart rate was so restricted (approx 117 bpm which was about 100 yards of running before I was winded!) My normal resting HR was low mid 60s to 70 depending how fit I was, and it was low mid 40s on Bisoprolol. My GP was worried I would be in the 30s when asleep which could have been dangerous (for me). I had already stopped taking it as I had only one AFIb attack up to that time so I was not in AFIb, was asymptomatic except the high rate anyway so it was clear that it was the medication that was the problem. I tried 25Mg Atenolol, another beta blocker, for a few weeks and it was better than Bisop but still pretty terrible with tiredness. Hence the GP put me onto the Verapamil as she decided I probably did not tolerate beta blockers.

We are all different with drugs, and AFib appears to be the result of many different things. I have never found any triggers. I suspect it was the cumulative result of many years of stress/lack of sleep but I wont ever know.

ps raising my heart rate still does appear to reduce the irritating ectopics when I get them. Don't know whether you have tried going for a fast walk when they kick off to see what happens?

Singwell profile image
Singwell

Hi, I'm on these drugs and find them effective. I recognise the tiredness in early evenings (though post ablation thus is much better for me). Consider your time of day for dosage of the Flecainide. I take mine when I wake up and then at 6.00. It sounds like it's the Flecainide that perks you up in the later evening. Are you on slow release Diltiazem? If so, you might consider taking it with food, rather than late evening. Flecainide away from food (wait an hour before eating) Diltiazem with food, that's my understanding. Other than being photo sensitive in the Diltiazem I get on well with this combination. Just a thought - is it important to you to eat your last meal at 3.00? I have awful digestive problems but seem to manage so long as I've completed my meal by 7.00 and don't go to bed before 10.00. I'm just wondering if the timing of food and meds might be making an impact.

mjames1 profile image
mjames1 in reply toSingwell

Hi Singwell, Thanks. I take my flec 8:30 am and pm so on an empty stomach. Take my time release dil at 8:30 pm so also on empty stomach. It is slow release. From what I've read doesn't matter with or without food for either but who knows. But I think the timing of my last meal, like you say, may have something to do with the side effects. Yesterday, I ate a couple of smaller, lower carb meals/snadks later, up until 6:30 pm and felt better. Only one day but I did read this morning that dilitiazem can increase blood sugar so maybe the fatigue I was feeling at 6:30 was a blood sugar crash from a spike earlier in the afternoon. Plan to take my blood glucose if I feel like that again.

Singwell profile image
Singwell in reply tomjames1

That sounds sensible.

mjames1 profile image
mjames1 in reply toSingwell

Or it could just be because my stomach is empty but in any event I will start eating later and see what happens.

GoPokes profile image
GoPokes

I was on dilitiazem and no issues. However, recently diagnosed with CHF and now on Metoprolol and back on lisinopril. Best ofluck!!

mjames1 profile image
mjames1 in reply toGoPokes

Thanks GoPokes. Good luck on the new drug combo.

SuziElley profile image
SuziElley

I was on a high dose of diltiazem slow release but the fluid retention was so bad it had to be reduced. In fact the oedema was still bad and I’ve had to come right down to 60mg, which I take at breakfast time. Flecainide is fine. I take 50mg twice a day, the first one as soon as I wake up so it’s well before I eat. Instructions on pack are for on an empty stomach and an hour before eating. The second dose I take in the evening just before bed. So, apart from the fluid retention caused by the Diltiazem, these meds have been working well for me.

mjames1 profile image
mjames1 in reply toSuziElley

Thanks SuziElley, Are you taking slow release 60mg or fast release? How many times a day do you take the 60mg? I'm on 120mg 24 hour slow release, once daily. I'd love to reduce it but not sure my doctor will allow because I'm 74 and he wants the nodal blocking effect of the dilitiazem to protect me from high flutter rates.

SuziElley profile image
SuziElley

Hi mjames1. I take slow release once a day. I'm 72 so don't think age has anything to do with it? May be worth having a chat to the doctor....

mjames1 profile image
mjames1 in reply toSuziElley

Suzie, I wasn't aware they made diltiazem in a 60mg 24 hour release. I only saw a 12 hour release. But if my side effects continue, I will ask doc about reducing dose

kevin_sidney profile image
kevin_sidney

I've had experience with PAF and Flecainide over several years. In that period I have been fortunate enough to greatly reduce the incidents of PAF, almost to the point of it completely going away. It may be a coincidence, but I put this down to avoiding the triggers (over tiredness, alcohol and stress), maintaining a healthy diet and I take a daily cocktail of Ubiquinol, Omega 3 supplement and a 5ml or so dose of Flaxseed oil.

My PAF first started back in 2014 and I would get up to 6 or so episodes a month. Now my PAF incidents are months apart and very mild. I always keep flecainide with me just in case.

Best wishes, Kevin.

mjames1 profile image
mjames1

Thanks Kevin. What dose flecainide do you take daily? You mention "I always keep flecainide with me..." -- so you also use it as a pill in pocket? At what dose? Do you also take your flecainide with a beta blocker or diltiazem?

if you want to find out anything about the drugs you're taking any side effects?Go to Drugs.com

Bahrain22 profile image
Bahrain22

I take Flec 50mg twice a day. I'm 41 and have been on it for 2-3 years now. I'm not aware of any side effects for me - I have always taken it without issue. It certainly does its job and I rarely get any PVCs when taking it.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

HiOne of your older texts.

Diltiazem is better taken in morning.

I had to separate the BB Bisoprolol to have 2.5 at night.

Check the flecainide and taking it together.

On Diltiazem I dropped down to 51 on 180mg. Day.

As Night is down to 47 wouldnt be good to reduce it with Diltiazem.

The nurse at NZ Heart Foundation said that the above two need to be separated.

I thought flecainide was pill in pocket.

You need the action to act throughout the day don't you?

cheri. jOY. 73. (NZ)

mjames1 profile image
mjames1 in reply toJOY2THEWORLD49

Not sure I'm following. What two drugs did your nurse say shouldn't be taken together? And who said diltiazem is best taken in the morning? Also diltiazem comes in both fast acting tabs and time release capsules. Flecainide can be used as PIP but csn also be taken daily.

Jim

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