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Starting to get me down

Kennyb1968 profile image
37 Replies

After a period of Afib free I have had 4 incidents in the past week. All the same: either middle of the night or first thing in the morning. I was taking 100mg of flecainide in the morning and at night for a week or so and was free of AFib but then had 3 of them while I was taking it. I think I was doing this wrong as I would take 200mg when it happened rather than 100mg and my GP thinks this was too much and could have caused atrial flutter rather than AFib. Stopped taking the daily dose yesterday as I have a cardiologist appointment today and boom, Afib at 0350 this morning. I always return to NSR after about an hour if I sit still or about 2 hours or so if I'm moving about. I am awaiting an ablation (53 year old, fit and no heart problems). Do I have to give the daily flecainide more time or should I be seeking an alternative until I get the ablation? I have noticed that Afib incidents are getting less severe i.e. heart rate is much lower and rhythm less erratic. I am thinking if proposing that I take 200mg of flecainide an hour or so before bed as 95% of my Afib occurs during the night or in the morning. All thoughts, ideas, etc. gratefully received.

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Kennyb1968
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37 Replies
mjames1 profile image
mjames1

Based on my experience, I'd give it more time. My episodes were also middle of night or early morning, so I adjusted my flecainide dose to reflect that. In your case, you might ask your doctor if you can try 150 before bed and 50 morning instead of 100 twice a day.

Also, when your doctor says your dosing may have caused flutter, did you take an ecg to see if it was flutter or afib? If not, that could be useful and easy enough with a Kardia or Apple Watch.

I also found that once I had Fleainide in my system from daily dosing, I didn't need that much extra flec to convert, if any, so sticking with the 100 makes sense. You could even try 50mg at onset and then wait another hour before another 50 as I was told.

If it does turn out that your afib espisodes are changing into flutter, consider taking an AV Nodal blocker like bisoprolol, ,metoprolol or diltiazem daily, or at least when you do the PIP dose, unless you already are. This is pretty common but not everyone here has been prescribed them. I used diltiazem until I got my flec down to 25mg twice a day.

Jim

Kennyb1968 profile image
Kennyb1968 in reply to mjames1

Thanks mate - sounds like you and I have a similar pattern - I'll suggest all you say 🤞

mjames1 profile image
mjames1 in reply to Kennyb1968

In my case -- and while one can never be sure -- I thought the mid night, early morning episodes were triggered by incomplete digestion. So, I also watched what I ate more, changed my last meal to earlier in the day, elevated the head of my bed, increased my PPI dose, took an antacid, etc. Anyway, now down to 25mg twice a day, no morning indigestion and been afib free for over 2 months. YMMV.

Jim

Kennyb1968 profile image
Kennyb1968 in reply to mjames1

150mg at night 50mg in the morning - just out of cardio - he's really confident flecainide will work for me given how successful it is as a PIP. Just need to get the balance right

mjames1 profile image
mjames1 in reply to Kennyb1968

Hopefully the right combo. You might find out that eventually you don't even need the morning dose, like I did. Conversely, if 150/50 doesn't work after awhile, you could try 200mg at night and nothing in the morning. You will still have enough in your system during the day but the night time dose will almost act like a prophalactic PIP.

I did numerous dose changes till things right plus a few lifestyle interventions. Let us know how things work out.

Jim

Kennyb1968 profile image
Kennyb1968 in reply to mjames1

Cheers Jim - if that one doesn't work we are going for 200mg in evening with 100mg held back for PIP or 100mg morning, lunchtime and evening.

Made loads of lifestyle changes already and more to come. Ablation in a few months too!

Kenny

Lyndylan profile image
Lyndylan in reply to mjames1

Jim, can you advise how to check for atrial flutter with the Apple Watch. I normally do ECGs on my watch whenI feel I’m in AFIB and also I occasionally get alerts from the watch of episodes when I’m sleeping. But sometimes when I wake up, I feel a rapid pounding heartbeat but the watch still shows NSR. I was wondering if this could be atrial flutter and how to test it?

mjames1 profile image
mjames1 in reply to Lyndylan

The Apple Watch (or Kardia) doesn't have an Atrial Flutter determination per say, but in general, aflutter is a fast and regular hr while afib has an irregular hr which is often, but not always fast. What you describe doesn't sound like flutter and perhaps are ectopics. Just a guess. You could post the ecg here for opinions, but none of us are really qualified to diagnose. You could also bring or email the ecg to your doctor for analysis.

Jim

Lyndylan profile image
Lyndylan in reply to mjames1

Thanks for the reply. I don’t really know how to recognise ectopics - so I will read up on that. I will record the next episode and share it bothers here and with my EP. They’ve just upped my Bisoporol from 2.5 to 5mg per day which has reduced the frequency of episodes. I am also taking 200mg of flecanide each day

Afibflipper profile image
Afibflipper in reply to Lyndylan

Sorry to butt in, I have AFib and the Apple Watch detects it but since going on Flecainide I have developed a flutter and the Apple Watch says inconclusive as it only recognises NSR & Fib apparently (I thought the watch was faulty)

GuyDora profile image
GuyDora in reply to mjames1

Do you wake up from the nighttime episodes? How do you know you flipped into Afib? I have no idea, if I have ever had a night episode. I guess a smart watch could tell??

mjames1 profile image
mjames1 in reply to GuyDora

Sometimes I woke up feeling funny and went into afib shortly after. Sometimes it was the afib that woke me. Once I dreamed I was in afib and woke up in afib. Honestly, kind of blurry at times what came first. And yes, I always confirmed with my Kardia and/or Apple Watch.

Jim

Kennyb1968 profile image
Kennyb1968 in reply to mjames1

Me too Jim - I use fibricheck on my phone but I know myself by taking my pulse. Tbh I am starting to obsess a bit and will wake up in NSR and then put myself into Afib through anxiousness

GuyDora profile image
GuyDora in reply to mjames1

I don’t know if I would wake up, but am very symptomatic, while in Afib.. I have a Kardia, but rarely use it. If my pulse indicates that my pulse is irregular and breathing becomes slightly labored, I will take a Kardia EKG.

Kennyb1968 profile image
Kennyb1968 in reply to GuyDora

I will wake up on the way to an episode - usual sign for me is an urgent need to pee. A couple of times I have woken with a start and that seems to prompt it. Loads of theories around sleep apnea and bradycardia but they aren't pushing the envelope too much as I am such an ideal candidate for ablation, flecainide reverts me very quickly (unless I have a big meal immediately after taking my PIP) and my Afib instance weirdly seem to be getting less severe.

GuyDora profile image
GuyDora in reply to Kennyb1968

I am very symptomatic, when I go into an episode. I will check my pulse, when I feel a little off, during my nighttime, bathroom visits.

Lyndylan profile image
Lyndylan in reply to GuyDora

Yes a smart watch will tell you but it depends on how long the episode is, I think the watch only checks every 45 minutes. My episodes wake me up and I do an ECG on the watch.

Bagrat profile image
Bagrat

Interesting about diff dose am and pm. The only time I did that was when I was reducing v. slowly from 100 twice a day to 50. Some Consultants are unhappy with diff dose am and pm, others advocate it.After 6 years on 100bd,4 yrs on 50 twice a day, now back on 100mg bd.

wilsond profile image
wilsond in reply to Bagrat

Yes mine says to take same dose. My GP thought different....🙄

pottypete1 profile image
pottypete1

I am a long term Flecainide taker.

Whatever you do you must not vary the dose unless instructed to do so by your EP.

THE MAXIMUM IN ANY 24 HOUR PERIOD IS 300mg.

I accidentally took more than I should have once and I felt very unwell for over 24 hours. I was lucky that nothing more serious happened.

Flecainide is a very dangerous medication if you do not adhere to the instructions you are given.

Hopefully when you see your EP he will arrange an ablation with as little delay as possible.

I have had to have a number of ablations but now my quality of life is significantly better.

Take care and keep calm.

Pete

Kennyb1968 profile image
Kennyb1968 in reply to pottypete1

Cheers Pete - all sorted 150mg at night and 50mg in the morning - 2 other plans in place to back this up and get me to my ablation.

Spiritji profile image
Spiritji

I am on different drugs so cannot give an educated comment in that dept but just wanted to add to remember to start off sleeping on your right side.........after a while you can switch but important to start off on the right hand side

Kennyb1968 profile image
Kennyb1968 in reply to Spiritji

Great advice - I definitely notice Afib is exacerbated by lying on my left.

Thanks,

Kenny

in reply to Kennyb1968

You've probably already considered and addressed this, but if you haven't then it's important not to eat later than three hours before bed. Drink alcohol at lunchtime, no later.

Taichid profile image
Taichid

I was given flecainide 100mh twice a day.After 5 days I was taken into CCU with flecainide induced tachicardia.

wilsond profile image
wilsond in reply to Taichid

Me too☹️

wilsond profile image
wilsond

Hope you settle down soon .I do find it odd that conflicting advice is given. I am in the grip of a 6 week more or less continuous AF and flutter episode,got ablation two weeks. Had been like you ,if any episodes, usually at night or early am. Prescribed 100 x 2 flec and 1.25 biso

Advised by GP ,as I couldn't get in touch with consultant, to take 50 mg am and 150 night.

Kept things very nice until I had infection 7 weeks ago.

Main point is when I got on touch with consultant he said we never advise giving a dose like that , either 50 x2 100x2 or 150x2.

Isn't it odd ? But I hope it works for you as it did for me , it held it well. Best wishes

Taichid profile image
Taichid in reply to wilsond

Flecainide stopped completely, then given beta blocker and pacemaker. HR stlll high then given digoxin which has brought heart rate down 60/70,s

BigArnie profile image
BigArnie

Hi Kenny, keep it under review. Flec worked (and works) well for me as a PIP, but when I tried daily dosing it also seemed great for a week, but then I went to daily episodes instead of weekly and it spiralled badly out of control. Seems I couldn't tolerate the volume build up - even at the minimum daily dose. I would also be tempted to add in something like Bispoprolol, subject to what your doctors say of course. Good luck.

Kennyb1968 profile image
Kennyb1968 in reply to BigArnie

Wow! That's concerning - what did they put you on instead?

BigArnie profile image
BigArnie in reply to Kennyb1968

I went to daily Bisoprolol, which worked really well on its own with the occasional Flec PIP until I had my second Covid jab, which caused some sort of heart inflammation. Lots of water under the bridge since then, but now back much more under control with exactly that regime again - alongside better diet, weight loss, breathing exercises etc.

Kennyb1968 profile image
Kennyb1968 in reply to BigArnie

That's great news - I had a chat with my cardiologist this afternoon and he's prescribed bisoporol to sit alongside my regular dose of flecainide whilst I await my ablation

DKBX profile image
DKBX

My EP always includes a beta blocker with flecainide. Metoprolol for me plus flecainide keeps me in sinus at 65-70 when up and about and 45-55 at rest. Of course that’s after 4 ablations and 5 cardioversions. I fully expect it’ll go wonky again but meanwhile ….

FitnessGotFibbed profile image
FitnessGotFibbed

I found that consistency is key with Flecainide. Since my episodes are usually after 12am, I take it everyday at 6pm. It takes about 6 hours to be a full concentration in the body. If I reduce the dose or mess up the timing, that's when I risk an episode. Also, like you I will have flutter if I try to use Flecainide to cardiovert. Relaxation and sleep work best. Good luck!!

Karendeena profile image
Karendeena

Hi Kenny1968, not able to answer your specific question on flecainide as I couldn't take it bug I am interested to see responses to your comment about afib kicking off in the night which is just what mine does usually around 3sm. Unfortunately once I start it tends to be with me for up to 48 hours and can be quite fast. I started at 3am this morning and despite taking a extra sotalol I am still in afib, looks like another sleepless night for me

Kennyb1968 profile image
Kennyb1968 in reply to Karendeena

Oh no, that's not good. I am lucky (so far) that it abates in a couple of hours once I dose with flecainide.

Take care,

Kenny

Karendeena profile image
Karendeena in reply to Kennyb1968

Thanks Kenny, sick of of it tbh, hoping it settles tonight. First episode since January thought I was doing well!

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