Irregular Heartbeat

[grahampark]

So frustrated last night. Had my usual walk early evening, ate a healthy tea and chilled out watching TV for the rest of the evening and just as I was about to come to bed, round 11, I feels it start, another episode of AF. Now I can’t pretend I fully understand the condition but there was no indication, or reason for it to go the easy it did. I came to bed but couldn’t sleep, took a flecainide pill about half hour later and managed to fall asleep. Just woke up and it’s still at it. I have to make notes of episodes to present to my doctor in two weeks and wonder what the next stage will entail. Surely this can’t go on forever?

[UScore]

My AF is very contrary. I go out and have a few beers, I'm fine. I do some intense physical activity, I'm fine. I eat a massive meal right before bedtime, I'm fine.

Wake up at 2am in the morning, after an early night and a light supper, after a week of healthy behaviour? Boom.

No rhyme nor reason sometimes.

I feel your frustration.

[grahampark in reply to UScore]

Hi and thanks for replying. Yeah so frustrating that you do all the things you are told to do and it still occurs. It’s definitely happening more frequently recently, I recently went abroad for a week and used 5 of my flecainide pills. I’m back at the docs in a few weeks and am keen, although nervous, on what he may recommend.

[jennydog]

I could have written your post. That's me to a "T."

[Jans5 in reply to jennydog]

Me too

[Kn177yn0ra in reply to Jans5]

And me.

[jeanjeannie50]

Hi Graham - Sorry, but yes it can go on for a long time unless you are one of the lucky people that are cured by an ablation, or can find medication that can control it - and a lot do.

What you are describing is just typical of what just about ever member of this forum has experienced. You are now at the start of your search for a cure. What strength Flecainide tablet did you take and who prescribed it for you? Lots of us on here have found Flecainide to be the best pill for helping to stave off our AF, whether taken as a pill in the pocket or regularly.

Let us know how things proceed with you please. I guess you will get a lot more responses as the day goes on.

Jean

[grahampark in reply to jeanjeannie50]

My flecainide is in my car, I will let you know what size it is. I had a heart scan a few months ago at my cardiologist and as things were “ok” he suggested the “pill in the pocket”. It was comforting to have with me when I recently went abroad although I used 5 in a seven day holiday.

[grahampark in reply to jeanjeannie50]

Hi there. My Flecainide tablets are 100mgs thanks.

[UScore in reply to grahampark]

Get this confirmed by a healthcare professional, but you can take more than 100mgs of Flecainide in a day.

I was initially prescribed 100mg of Flec as PiP, and when it didn't work, I phoned up the cardiology department of the hospital where I saw the Cardiologist and one of the Arrhythmia nurses told me I can take upto 300mg in 24 hours, so if 100mg doesn't work try another one in a couple of hours. That worked.

[grahampark]

That’s what I’m starting to figure out. When it first started 3 years ago, A&E and the doctors said it was the alcohol etc so I have cut down a lot. I even went 18 months with out any attack so much so that my cardiologist took me off warfarin and beta blockers. Unfortunately, 11 days later, it started again. It’s definitely happening more regular now and when I report back to the docs in a few weeks, I’m keen although nervous, on what he may recommend next.

[Dodie117]

Check if your cardiologist us an EP and if not ask for referral. Consider ablation. My EP said earlier the better so i made the choice to go for this as a first option rather than the usual meds route. That was 4 years ago and AF free since then.

[grahampark in reply to Dodie117]

Wow that’s brilliant and thanks for that. I will check out the option thanks.

[jeanjeannie50]

Did your AF stop Graham? I would ask your cardiologist if you can take a higher dose of Flecainide at the start of your AF. Some people take 1 x 100mg and then another an hour or so later if the AF continues. Others take a one off dose off 200mg. However, you really must get permission to increase any dose of Flecainide as it's quite a powerful drug.

Jean

[grahampark in reply to jeanjeannie50]

I appreciate your message and take on board what you say. I have no intention on increasing my dosage unless advised by cardiologist. My AF spell the other evening lasted 9 hours. I’ve had some in the past that have lasted only a an hour or so. I also think I’ve had flutters lasting only seconds but can’t confirm this. Thanks again for you reply.

[UScore in reply to grahampark]

As I said above, don't wait for your appointment. If you are known to the cardiology department then get in contact with them.

I emailed the secretary of the Cardiologist I went to with a question, and I was given the phone number of the Arrhythmia Nurses and was told I could ask them questions. They were very good at dealing with what I asked, and told me I was ok to take an extra flecainide dose.

[Hidden in reply to UScore]

If you take 150mgs of flecainide twice a day (as some of us do) you are unable to take extra as 300mgs in 24 hours is the max dose. Some people take 50mgs x 2 and others 100 x 2 and one or two take 50mgs x 3 per day.

[PaulaEKing]

Hi, I don't know what flecainide is (sorry, over here in US) but I find that if I have surprise AF show up (which fortunately isn't too often) I will take an extra amiodarone. This is of course, something I have yet to mention to my cardiologist, although in the beginning I was taking 400 mg then once we realized it worked for me when it was added to Entresto and metoprolol, they dropped it to 200. I'm notorious for self medicating (again, something I wouldn't recommend to a sane person) but since we don't have free health insurance over here and my cardiologist is $60 copay each visit, I found it works for me ok til I have to go back for a regular checkup every 6 months. Just another story, again, your doctor would probably kill me.

And, I do find it'll flare up whenever it feels motivated whether I party, or not...

[Hidden in reply to PaulaEKing]

Flecainide is also known as Tambocor.

[cuore in reply to PaulaEKing]

You do not say how long you have been on Amiodarone. It's really toxic and some have said the drug of last resort. Unless it is the "loading" period, generally the dosage is 200 mg.

Someone on this forum recently wrote that when the cumulative dosage of Amiodarone reaches 30 g, a danger zone is arrived at . The example was 200 mg daily for six months. I believe it was Bob who said," It's not the side effects, but the effects on the body."

I have been placed on Amiodarone after my first ablation July 3, 2017. When I went back into AF/Atrial Flutter ( after cardioversion lasted little) my EP said to take 3 Amiodarone in the morning for two weeks. When I went back to sinus, go back to one pill. ( I am now going for a second ablation)

In my case, in just three months, my optometrist said I had mineral deposits in my eyes which is one of its effects on the body. Another big one is the effect on the thyroid.

You say you are going for your check-up every six months. You must have reached this "danger zone." My friend's EP said that he takes his patients off Amiodarone as soon as possible.

What I am really saying is to question the length of time you are taking Amiodarone. Good luck in balancing your meds.

[PaulaEKing in reply to cuore]

wow! no wonder they wanted me to cut down from 400 - 200! That's just super news. Well, as this point in my life, very little shocks me any more. Thank you so very much for that info! I will ask the doc when I go back and be a bit more conservative in my estimation of what works for me! I drink too, so I'm probably screwed but (sigh) whatever...

[PaulaEKing]

I will mention that ablations are a lot more rare over here. Don't know why. Newer tx, maybe?

I mean they might not have been around for as long...

[cuore in reply to PaulaEKing]

From what I have read, the U.S. is very advanced in treating AF. There are 4 top centres in treating AF: 1. Mayo Clinic, Rochester Minnesota, 2. Cleveland Clinic, 3. Strong Memorial Hospital, Rochester,New York, and 4. Boston, Mass. There are other top notch places such as Austin, Texas run by Dr. Natale.

Furthermore, the advanced non-invasive 252 lead Cardio-Insight Vest for mapping was approved for the U.S. in February of this year. ( Canada is still waiting approval).

Major centres do lots of ablations, but you may be living in an area where few are done.