300mg of Flechanide

[Flyer2820]

I was on 100mg of flechanide 3 times a day which has been the only thing that kept my af under control. I had 10 weeks and 5 days af free. The cardiologist however did not want me on such a massive dose so I had 100mg twice a day plus 1.25mg of bisoprolol. That put me into bradycardia and I was rushed in to hospital last Thursday and kept in overnight. The cardiologist has now changed my medication to 50mg flechanide twice a day and 1.25mg bisoprolol, and I back in af. I am having an ablation on 5th November and am trying to hold it together till then. My question is, has anyone else been on 300mg flechanide for a prolonged period of time as the cardiologist is not happy with such a massive dose, but it has been the only thing that has worked for me.

Regards Flyer.

[BobD Volunteer]

300mg per 24 hour period is the maximum dose permitted. Flecianide can cause other arrhythmias which are more dangerous than AF so best to avoid being on such high dose for long periods.

A while ago I was given a large dose IV whilst in hospital descibed by my EP as" a shed load" which caused another doctor to think I needed a pacemaker to keep me alive. My EP said no it was the flec and yes I'm still alive.

[Flyer2820 in reply to BobD]

Thanks for your reply BobD. This thing really is a scourge. I am just hoping that I can manage until next week as I am constantly in discomfort with indigestion or af. Knowing of course that indigestion or reflux is part of this problem.

Regards Flyer.

[Visitingcat in reply to Flyer2820]

During my last bout of afib I suffered with awful indigestion symptoms. A feeling of dull pressure pain and wanting to burp but I could not. I found this really frightening, I would be gripping my chair arms and exhaling was like gasping but I was always telling myself it was “just indigestion”

This could last a couple of hours. It was often after the slightest exertion ( standing washing dishes was enough to start it off )

I had a cardioversion six weeks ago and have not had any indigestion remedies since after taking them constantly. I feel totally different.

I think it was my poor heart jumping from 40 to 160 BPM (checked on my kardia)

Is the indigestion you are suffering like this?

No flecainide though, just bisoprolol and hospital consultant put me on amiodarone to help with the cardioversion. My GP prescribing isosobide helped a lot.

Best wishes for a successful ablation and hope it sorts out all your symptoms, I would jump at the chance to have one and stop this horrible feeling coming back ( as I’m sure it will eventually). I would love to know how you get on.

[Flyer2820 in reply to Visitingcat]

Hi Visitingcat, You have described my indigestion symptoms exactly. I however do burp. (Sorry can't describe it any other way) This is a classic symptom of af. and something I can put up with. It is far from pleasant but better than feeling dizzy, sweating and feeling sick.

Hoping that the ablation puts it all right.

Regards Flyer.

[Visitingcat in reply to Flyer2820]

Hi Flyer

Feeling dizzy, sweating and feeling sick must be awful for you. I bet you can’t wait for your ablation.

It was the being unable to burp ( sorry it is a bit grim typing that isn’t it?) that made it so frightening as I could not relieve the pressure on my chest.

My Gp puts it down to angina as I have had mild angina diagnosed so gave me the isosobide dinitrate. It did help a lot. Not suggesting that you have it though.

I only ever get these symptoms when in afib and they were always only mild before but this last time was horrible and felt disabling, I could not do anything or go anywhere, it’s made me dread afib coming back : (

[Flyer2820 in reply to Visitingcat]

Thanks for your reply Visitingcat. Slight chest pain like indigestion is a symptom of af and of angina. I know this because my wife has angina, she started in af two months after me in 2017. We were made for each other, or she doesn't like me having something without her having it. It's something we unfortunately have to put up with. Hopefully that will end after my ablation.

Best wishes Flyer.

[Visitingcat in reply to Flyer2820]

Love your post, you sound so supportive of each other...💕

[Flyer2820 in reply to Visitingcat]

After 48 years married we have to, otherwise we would need zimmer frames.

[Visitingcat in reply to Flyer2820]

😂😂😂

[Padayn01]

Sorry to hear this, when you when into bradycardia how low was your heart rate?

[Flyer2820 in reply to Padayn01]

Between 40 and 45 bpm.

[dedeottie]

Hi I was on 300 mg of flecanide for 2 years. At that dose I developed visual side effects which when the dose was reduced to 200 daily lessened considerably. Eventually flecanide started to be proarhythmic for me so I was swopped to sotalol and the visuals disappeared, so the effects were not long lasting and were reversable. X

[Flyer2820 in reply to dedeottie]

Thanks dedeottie, I have had double vision on occasions, probably down to the flechanide. Hopefully after my ablation I will be ok.

Regards Flyer.

[Gowers]

I had x2 bouts of af the week before my ablation (180beats a minute) + was exhausted but! It meant i went into af as they started the ablation so could zap the problem areas. Thought that week would never end but... i had every faith that the cardiologist & his team would be doing their best for me. Do let t us know how you get on

[Flyer2820 in reply to Gowers]

Hi Gowers, thanks for that, it is reassuring to know that even if I go into af before or during the operation they can still go ahead. Wanting it overwith now.

Regards Flyer

[betsea]

Are you seeing an EP?

[Flyer2820 in reply to betsea]

Hi betsey, no I am not seeing an EP. I live in Great Britain UK and not sure if we have them here. One thing I have learned is that that all cardiologists can tell you different advice, so this makes it difficult to be reassured that it is right. It is the last cardiologists advise that put me in hospital last Thursday. Hoping to manage until next Tuesday.

Regards Flyer.

[Hidden in reply to Flyer2820]

We do, they are the guys that deal with the electrical side of the heart and perform ablations

[Flyer2820 in reply to Hidden]

Hi Mikee69, thanks for that info. My af is caused by an electrical fault from a dicky valve. I think I'm running on 12v DC instead of 240v AC. Perhaps if I stick my finger in the plug socket it may put it right, or it may not worry me anymore.

[nikonBlue]

Hi, I've been on 150 flecainide twice daily since my diagnosis 5 years ago. I also take Bisoprolol (5mg+1.5mg) daily. I was on perindopril but was taken off that a couple of months ago.

I'd been on a very low dose of Thyroxine for an underactive thyroid issue for many many years but blood test said I didn't need this and so was taken off as this medication can cause arrhythmias.

What are we to do really but listen to what the doctors tell us, and listen to our own bodies. All the best for the 5th.

stay well

Blue

[Flyer2820 in reply to nikonBlue]

Hi nikonBlue, I agree with you that we need to listen to our own bodies. I wish some of the cardiologists would listen to the patient as the one that advised me to adjust my medication did not listen to the fact that my heart rate went down quite low in the first place. In his defence however he did tell me to stop immediately if I went dizzy or felt ill. I think it probably is very difficult to control af and as often been said we are all different.

Best wishes.

Flyer.

[Thomas45]

I was on Flecainide for a total of 12 years.in the first 2 years the dose was raised from 50mg to 150mg twice a day. After 10 years on that higher dose I was found to be in persistent AF. At that point I came off Flecainide.

[Flyer2820 in reply to Thomas45]

Hi Thomas45 I wonder if the permanent af was just a natural progression of this horrible illness or caused by the flechanide. Af doesn't get better, it gradually gets worse as has been the case for me. Feeling better this morning and hoping it stays that way. Hope you get it sorted.

Regards Flyer.

[Thomas45]

Hi Flyer 2820, my AF is now deemed to be permanent AF. It plus chronic asthma, and lymphoedema in my lower legs are well tolerated.

What drives me round the bend was a very rare side effect of Bisoprolol, which I no longer take. The side effect is chronic urticaria. The pH of my body/skin is out of kilter due to the effects of Bisoprolol. I can no longer eat acidic foods such as tomatoes, grapes, oranges,kiwi fruit. Despite talking antihistamines regularly I get painful rashes, especially when I'm warm in bed. These can cause me to be awake for three or more hours every night.

[Flyer2820 in reply to Thomas45]

Good greaf mate you are suffering. The only relief I have is that there is always someone worse off than me. You obviously are. Wishing you well for the future.

Regards Flyer.

[Bee-Honest]

I am on 100mg flecainide twice daily, with a backup of 100 if I suffer an AF episode, works for me, not told about only being on it for 24 hours though.

[Flyer2820 in reply to Bee-Honest]

Hi Be-Honest 100mg twice a day did not work for me but 100mg three times a day is a massive dose and not recommended for to long, that is why the cardiologist stopped it. I was on that dose for about 3 months.

Regards Flyer.