AF and AFL

[jobristol]

Having been free of Flutter after having ablation in October 17 I went into AF (Kardia readings said AF) in August. Saw Cardiologist in September and ECG said Flutter, he referred me for possible further ablation. Last week feeling quite unwell so went to GP, she did ECG it said AF, so seems I am constantly in one or the other! She suggested I start taking Flecainide to see if it helped as Cardiologist had said try it (in his review letter to GP) if I started to feel worse. She said stop Bisoprolol (1.25mg daily) and see how I get on with the 50mg x 2 Flec. Last night felt quite unwell, stomach pains and nausea and could feel heart pounding although only at around 60-70 bpm. This morning still have the nausea and slight stomach pain. As yet still in AF or AFL, so Flec not converting me to NSR or is it too soon for it to be working? Could it be the Flec causing this or a possible bug. Anyone else had this when starting Flec? Also I’ve been told by EP’s (who I’ve been referred to) secretary that I may have to wait another 10 weeks or longer to see him. Would it be worth seeing him for initial consultation privately to hopefully get on NHS waiting list sooner? Any thoughts on all this welcome. Sorry for such long post!

[wilsond]

Hello sorry to hear of your troubles. I was faced with a 14 week wait and did go private for initial consultation,saw him in 10 days,then transferred to NHS. Was 175.00 well worth it. Xx

[jobristol in reply to wilsond]

Thank you.

[Fastbeat]

So sorry you are having problems again. I don't really have any advice for you except if you feel waiting for appt is to long then investigate time wait and cost for inital consult, although from what i read on here you must make clear you want any further tests etc on NHS.

Best wishes for whatever you decide. Jane.

[CDreamer in reply to Fastbeat]

As AF is not considered an emergency it won’t help unfortunately. The waiting times in various parts of the country are a lot longer nowadays. My friend had to wait 20 months for a first appointment.

[jobristol in reply to Fastbeat]

Thank you Jane. The EP I’ve been referred to is Dr Barman, I think I read on here that you’ve seen him. What did you think of him? Jo

[Fastbeat in reply to jobristol]

Yes he is my EP. I like him very much,easy to talk to does not seem to be in a hurry and also listens to you,i got on well with him and would be more than happy to see him again if needed. Jane

[jobristol in reply to Fastbeat]

Thanks Jane, that’s most reassuring. Jo

[CDreamer]

50mg is a small dose of Flec to convert you - I was issued 300mg for conversion.

It is possible that the GP is not able to prescribe a higher dose without express permission from your specialist as she may not have the competency in arrythmias but what she can do is write a letter describing the issue, enclosing the ECG and asking for advice which should come through before your EP appointment.

Flec is known to cause nausea and should never be taken within 2-3 hours of eating, needs an empty stomach. The only time I had stomach issues was when I accidentally took a dose within 1 hour of eating - felt terrible for several hours.

Flec is known to cause other arrythmias and is a toxic drug and I seem to remember that some advise it needs to be taken with a Beta Blocker? The interactions with other drugs are quite complex which is why it requires specialist advice on your particular circumstances.

[jobristol in reply to CDreamer]

Thank you CDreamer, will see how it goes over next couple of days and if I still feel bad may try for private appointment with EP if only for expert advice on meds. I really don’t have any confidence in Cardiologist as always see a different one and the advice I get from each is always conflicting. I’m always told next review will be 6 months but it never is, it’s usually 9-12 or sometimes more! Jo

[CDreamer in reply to jobristol]

I think that a very good course of action. It’s very disheartening isn’t it? Unfortunately I have seen the service decline markedly in the last 3-4 years but when you consider that there are only about 1200 EP’s in the UK and millions of AFibbers I can understand it.

I must say I tend to have private consultations now but even then it can be several weeks before I can get one.

[jobristol in reply to CDreamer]

It is disheartening and very hard not to let it all get you down but onwards and upwards!

[Gowers in reply to CDreamer]

Your post has been very helpful re Flec - I had terrible nauseau for 3 weeks after ablation & being on 100mg x 2 a day. Much better now on half the dose. I didn't know about the timing of taking this medication, don't think this advice is on the fact sheet so thank you for the information

[Hidden in reply to CDreamer]

I think the 50 mg dose twice a day is way too low to convert you. When I was first given it in a hospital I got 300 mg, which converted me very quickly. Then, as a Pill in the Pocket my instructions are 200 mg for conversion to be followed with another 100 mg if no response in 12 hours. Thankfully, it has never taken more than the 200 mg to convert me at home. And I am even more thankful that another month has passed without any incidents thanks to my strict low carb diet.

[jobristol]

Thank you Jo. Trouble is I was discharged from that EP, then discharged back to my Cardiologist and now referred to another EP so it’s like starting over again! I shall see how it goes over the next few days and if still feeling bad will try for private appointment even if just to get opinion re meds etc. Jo

[Gowers]

I felt exactly the same on Flec medication along with fast heart rate from time to time. I was put on 100mg x2 a day straight after ablation but had it halved after 2 weeks & slowly feeling better on the new dose. Certainly worth getting a private consultation if you can in order to get your problems sorted & to give you peace of mind. Do let us know how you get on.

[jobristol in reply to Gowers]

Thank you Gowers, good to know I’m not the only one. Jo

[Shcldavies]

Flecainide is a wonder drug for many but can cause flutter in some, often taken with bisoprolol to reduce the risk of flutter. Unfortunately for me it did cause a bad flutter after 3 months use. Had a cardioversion to get back in NSR, good news was that it put me to the top of the list for an EP study and ablation which was done last February. Unfortunately there is no way of knowing how the drugs will effect you but it is important that you let your Doc or better still EP know any significant effects, for them amend your meds accordingly, not least as the Flecaiide can cause quite a bad flutter.

[Flyer2820]

Hi jobristol, please don't give up on the flechanide, when I was put on 300mg of flechanide from 200mg it took at least 2 months to fully kick in and start to work. I have only recently had an ablation (5th November) and am now down to 100mg (50 x2 per day.) Hope all goes well with you with this horrible illness.

Regards Flyer.

[jobristol in reply to Flyer2820]

Thanks Flyer2820, unfortunately the nausea got worse yesterday and heart rate was dropping to 35. GP has now stopped Flec and is contacting Cardiologist for advice.

[Flyer2820 in reply to jobristol]

Hello again jabristol. Sorry to hear that, Unfortunately it is very difficult to get the meds right with af. I went into bradycardia with 200mg of flechanide and 1.25mg of bisoprolol. 50 x2 of flechanide and 1.25mg of bisoprolol is ok with me. Hope all goes well with you.

Regards Flyer.

[jobristol in reply to Flyer2820]

Thank you. Think anti-arrhythmics are just not for me, I was on amiodarone in 2016/2017 before and after cardioversion (which worked for 2 weeks) and felt awful, the amiodarone then caused flutter. Once I stopped it I felt so much better even with the flutter.

[KMRobbo]

Hi first thing i am not medically trained but I have sone personal experience.I went the opposite way to you, I had AF and had a PVI CRYO ablation. This fixed the Afib. 8 days later I went into fast re-entrant atrial flutter (rate controlled by the diltiazem I was still taking). Unfortunately this was misdiagnosed when I went back to hospital and it was believed I had gone back into afib. Owing to this the Flecainide 2 × 50 daily was increased to 2 x 100mg. Things went worse! I was sent for an echo to see if there was a possibility of cardiac taponade. The echo operator was very experienced and confused by something on my notes so took another ECG and showed it was flutter not AF. Flecainide can promote flutter! In fact when I went to my EP I was advised the flutter was probably caused by the flecainide as it was not present during my ablation, nor previously

I reduced the flecainide back and had to have a second ablation for the flutter.

Good news it all got sorted and I have not taken any drugs since May 15 2018. However my observation was Dont TRUST any ECG unless reviewed by an expert. Non experts can interpret wrongly.

Make sure you consult your EP over the use of flecainide. My experience is flecainide promotes flutter so if you really have flutter don't take it.

Also if you go into fast afib/ flutter you possibly need rate control drug in addition to the flec.

Best wishes

[jobristol in reply to KMRobbo]

Thanks KNRobbo. Nausea got worse yesterday and resting heart beat dropping to 35! GP has stopped Flec as of today as adding bisoprolol would just drop heart rate further. So back to low dose bisoprolol while GP contacts Cardiologist with ECG for advice.

[Palpman]

I was given Flecainide for atrial flutter that I suffered with for 27 years. It stopped the flutter but caused AF.