Flecainide

[Harrythmia]

my flecainide was increased from PIP to 50mg twice day. Then it went up to 100mg twice day. Despite this I still wake up at night with AF from time to time. I have found now last couple times though that if I persevere and just “sit it out” without taking more flecainide - the AF subsides by itself and my heart rate seems to return to SR within 30-40 minutes. I’m just wondering whether this “wait and see” policy might work for others too or whether for me it was just a freak event ? Also, if wait and see is sensible, how long for ? Harry

[mjames1]

Quite possible that the 100mg on board is shortening your events and that an additional PIP dose is not necessary. As long as you keep converting in 45 minutes, see no reason for an additional dose, which would take 1-4 hours to kick in anyway You can always take the PIP dose if it stops working. How long? Based on your history, I'd wait about 1.5 hours before taking the PIP dose. Of course, always good to run everything by your ep.

BTW how is your heart rate during the episode and how symptomatic are you? I was on Diltiazem while taking my Flecainide, so my heart rate was somewhat controlled in afib.

Jim

[Harrythmia in reply to mjames1]

hi Jim thanks for your v good advice

You’re right the 100mg flecainide BD plus the 300mg daily of diltiazem must be having an effect in controlling the length of my AF episodes. When I get an episode always at night during sleep I would automatically pop in an extra 100mg tablet having already taken the 2nd daily dosage at bedtime 3-4 hours earlier. Normally within 45-60 mins I’d be back in SR which I had put down to the “extra shot” I gave myself. But from what you say, it would have gone back by itself in that time which is interesting. Regarding my HR during the AF, it’s usually around 120-130 but the graph pattern is pretty erratic.

[mjames1 in reply to Harrythmia]

Yes, if you've converted without flec in 45-60 minutes, good chance you don't need the xtra dose.

Jim

[Strawberryfields1 in reply to mjames1]

Happy to know that the Diltiazem can help control the fast heartbeat.

[Drounding]

My journey seems similar to yours. I started off with 50mg PIP and then went tp 50mg am and pm and now 100mg am and pm. I also wake up sometimes early in the morning (3 or 4am) with afib. As that is quite close to my am dose I take it early with Bisoprolol (which I also take am).

It usually takes 3-5 hours to revert for me. I've never had to take an additional dose and I'm quite reluctant to do so. If I get an episode in the afternoon then again I might take my pm dose early but not have any more that day.

It does seem slowly progresssive and I do expect that some time in the (hopefully distant) future I may need 300mg per day. The Flecainide is doing a great job keeping it at bay so far though.

[Harrythmia in reply to Drounding]

thanks Drounding. Yeah I agree taking the breakfast dose at 3am instead makes sense. But I thought the 100mg bi-day was what I would call a “maintenance dose” to keep the wolves away. I had thought that an actual episode would need an “blast” so to speak over and above maintenance dose. But I shall perhaps try your method. I agree taking any more of this stuff unnecessarily is def a no no.

[BaileyC57 in reply to Drounding]

What is PIP?

[Drounding in reply to BaileyC57]

Pill In Pocket. A dose that you would only take if needed when you have an afib episode.

[BaileyC57 in reply to Drounding]

What is the name of the pill? I guess I am a little stupid for not knowing this!

[BaileyC57 in reply to BaileyC57]

If the name of pill is Flecainide, I took that and I started to get thicking around the heart and had to stop that medication!

[Harrythmia in reply to BaileyC57]

yes it was flecainide which I understand many are or have been on. Never knew about that adverse effect on wall of the heart. Sounds serious

[BaileyC57 in reply to Harrythmia]

Flecainide did not cause the thicking of the heart , they said it was my blood pressure too high and it is mild anyway but cannot take this type of medication for this condition!

[Speed in reply to BaileyC57]

I did have a CT coronary Angiogram to confirm that there was no narrowing of my arteries in the the heart as this would have meant stopping Flecainide

[BaileyC57 in reply to Speed]

Glad you got one and everything turned good for you!

[NLGA in reply to Drounding]

How interesting I am on 50mg Flecainide I also wake about 3am with breathing difficulties and AF

[Hallju]

instructions from my EP are to wait until I’ve been in AF for 2-3 hours before taking a 100mg Flecainide PIP (then wait 6-8 hours before taking another—max. 2 times) , I also take 50 mg twice daily as maintenance. I sure wish mine would resolve in 30-40 minutes. That is wonderful.

[Harrythmia in reply to Hallju]

thank you Hallju My practice with pill in pocket approach is to take a blast of flecainide the minute the episode starts rather than wait 2-3 hours. I thought the idea was to get the heart back into SR asap to minimise any risk of stroke. Is my understanding incorrect ?

[Hallju in reply to Harrythmia]

This is my prescription, and I confirmed with the doc office that I understood my instructions correctly. 🤷🏼‍♀️

Med Name: Flecainide Acetate Oral Tablet 100 MG]

Sig: TAKE ONE TABLET BY MOUTH EVERY SIX TO EIGHT HOURS AS NEEDED (FOR ATRIAL FIBRILLATION THAT LASTS MORE THAN 2-3 HOURS)

[Teresa156 in reply to Hallju]

Hi Hallju,

I agree with Harrythmia totally…are you absolutely certain that’s right? As Harrythmia pointed out, a PIP approach is to stop the Afib as quickly as possible. If you were in Afib and you’re already on the maintenance dose of fleconaide, it does seem odd that you’d wait it out for 2 hours before the PIP. Sometimes you need to wait a short while if taking a beta blocker, or calcium channel blocker first before Fleconaide, as I’ve understood, but not in the scenario you mention above.

[Harrythmia in reply to Teresa156]

hi Teresa. I think there may be some differing opinions on this even within the medical profession as to what sufferers should do. ‘Sit it out’ or act fast and ‘pop another pill’ ? That’s the dilemma certainly for me. I am petrified of the thought of not doing anything wondering if my heart will ‘chuck out’ a tiny bit of congealed blood as it pumps erratically. Blood thinners aren’t necessarily a guarantee against this as I understand it, so my strategy is ‘blast’ it with a shot of flecainide the minute a AF starts. Perhaps there is no hard and fast rule ?

[Teresa156 in reply to Harrythmia]

You may be right. I just thought a PIP was taken in order to get back into NSR as soon as poss, like you. I know amounts differ of dose, but it seems strange to wait 2 hours before taking further flec, but perhaps the medics have their reasons…

[Hallju in reply to Teresa156]

I replied to Harrythmia with this 🤷🏼‍♀️

This is my prescription, and I confirmed with the doc office that I understood my instructions correctly.

Med Name: Flecainide Acetate Oral Tablet 100 MG]

Sig: TAKE ONE TABLET BY MOUTH EVERY SIX TO EIGHT HOURS AS NEEDED (FOR ATRIAL FIBRILLATION THAT LASTS MORE THAN 2-3 HOURS)

[Teresa156 in reply to Hallju]

Hi Hallju,

Thanks for coming back. You obviously have a different regime for your PIP - but if it works for you, and sorts it out, then all good 😊 I hope you understand why it sounds a little different to us, as the PIP approach is usually to be taken at the onset of Afib, to try and stop it as soon as possible. Your EP must have his reasons and I’m certainly not going to question it.

[secondtry]

Check for sleep apnoea, try a nasal strip. Also breathe through the nose at all times.

Eat early and light.

Do something that relaxes you in the hour before bed (maybe music, prayer or a quiet walk in the countryside).

Do your homework on improving Lifestyle choices eg sugar -50%, gluten -90% & stress busting on all fronts, magnesium & CoQ10 supplements + lots more frequently mentioned here.

[Harrythmia in reply to secondtry]

thank you All good advice I will take on board. Not sure if I have sleep apnea Does it really trigger AF? What is a nasal strip?

[secondtry in reply to Harrythmia]

Can contribute to a burden that triggers AF.

weldricks.co.uk/products/br.... (nb. I have no commercial interest in this company).

[Andy-1961]

I found all the feedback very interesting as I am in a similar situation to you and others . I am in dilemma myself as AF especially at over night more recently which disturbs sleep and is debilitating. Mentioned to my Cardio nurse about this and has suggested increasing my night time dose to 150 mg and well as the 100 I take in the day . Like others I have been and am reluctant to increase my dosage and have had the same pip dilemma . Frequently I will take my morning pill early as also mentioned . Not really sure what to do for the best , I just know my condition is progressive and trying to do all the right things at the right time .The curse that we have is as individual as we all are . So difficult to know if what works for one will work for all . I think that is what is make it so tricky . That is why this forum is so invaluable.

[Banquo in reply to Andy-1961]

You hit on a lot of the conveyor belt difficulties of this condition! Generally speaking it does seem to progress from the here and there occasional to the more common episodes, to the point AFib episodes start to break through the medications that once worked. Then you can either try and up the dosages or change them to see if something else can work, or start going down the ablation route. Anywhere along there you may get short or very king respites from those darn episodes! Myself, I've had one ablation that didn't seem to work so am waiting for a second, with AFib episodes currently, knock on wood, held at bay for the most part with an increased dose of Flec and Diltiazem. I don't like being on a relatively high dose of the meds, including now an anticoagulant as well...but as we all know anything feels better than those darn AFib episodes and not knowing when they will come or go. Good luck to you and finding your way to relief!

[Andy-1961 in reply to Banquo]

thank you for response , reassuring and some comfort to know we are not alone . I omitted to mention I am on the wait list for an ablation , can’t say looking forward to it but if it works fine but as you confirmed it is not a given . Wish you well also

[Millbrook]

My husband was on flecanide 100 mg 2x a day. He had paroxysmal afib. It gradually developed into persistent afib and could not be controlled even when the additional 100 mg was taken.

Then he developed atrial flutter- which could have been caused by flecanide. He was given digoxin to control the heart rate while waiting for ablation. He went for pulse field ablation for the afib and the cardiologist also addressed his flutter using another machine.

His cardiologist advised fixing any afib before the structure of the heart is damaged then it is harder to set right. When his heart rate went up his BP would drop very low. It was really frightening.

It has been 4 months since his ablation and all is well

Wishing you all the best

[Andy-1961 in reply to Millbrook]

thank you for your response , I pleased your husbands ablation was a success . I am awaiting my first ablation with some trepidation but if it works that would be great . Wish you both well also .

[bobbyp28]

so just curious….I am flipping in and out of Afib several times a day now (I have “progressed” to this point - post ablations (2). I am on Sotolol 80 x 2 per day. I was on Flec (50) I think. Sotolol seems to have suddenly stoped working as it should for me. Wondering if when I flip in to AF today I should try one of my Flec PIP that I still have some of. IE.- what are the issues for temporarily mixing in a Flec with a current regime of Sotolol? Thx!

[Banquo in reply to bobbyp28]

Definitely a question for your doc...i would not just out of experimenting start mixing control drugs. I only know Flec, but it's a strong drug. Maybe doc will get you back on flec at a higher dose if the other drug isn't working? Anyway...I don't know the other drug you mentioned, but have had enough drug interaction to know not to take them lightly any more, especially with these rhythm meds. Hope you can get some direction from the doc and get some relief! Good luck...

[bobbyp28 in reply to Banquo]

thanks...I see your point!

[Speed in reply to bobbyp28]

Were you taking both Sotolol and Flecainide in the long term previously? If so, from a layman’s point of view, unless you were specifically told not to take Flecainide (there are underlying conditions when it should not be taken) or it became incompatible with the Sotolol, then you would have thought you should be able to return to a previous regime, unless of course you are now taking additional meds. However, I think this only confirms that it is sensible to ask your doctor/ consultant and I would not recommend you make any Med changes without approval first. It sounds like this has been ongoing for a while so no immediate urgency and time to get approval.

[Karendeena]

I always sit it out

[bean_counter27]

It's fine to obtain intelligence from others about what works/doesn't work for them but we're all different. So enhance your understanding about what works/doesn't work for others but ultimately, you need to discuss your medication/options with your cardiologist and ensure your treatment is specific to your circumstances.

One question I would be asking is how do you know how long you were in Afib before you woke up? I have a Withings Scanwatch and it has reported a couple of Afib episodes have occurred while I was sleeping but they didn't wake me up.

[bobbyp28]

Note. to all....thx for the input....I have been quite good at using the Apple Watch Heart App to print a 30 second ECG that will show Rate/Rhythm and Afib or Sinus as the case needs be...thanks to all.. Currently on Metoporol, Sotolal.....but prior to Sotolol was on Flec. (still have some Flec in the bottle...)