Apologies, Ive been lurking a while here so it's about time I said hello!
In January my NHS consultant has increased my dosage to 200mgs flec daily - I was previously on 15mg daily for 6 months continous. I also take 240mg Diltiazem daily.
This regime was prescribed following 3 separate admissions for emergency cardioversions with paroxysmal af heart rate of up to 240bpm. These were in June 2023, June 2024 and July 2024. I wasnt given any regular meds until after the 3rd epsiode. And each one left me weakened and unable to work for several weeks. I'm back at work now, but still having the odd breakthrough AF event of milder intensity every few weeks - the last being mid January which was cured with a larger dose of flecanide.
I'm told there is no way I can get off these drugs now without having further attacks. I'm 54 now; I was 52 at the time of my first attack of AF. I have lost approximately 15% of my body weight and I'm exercise intolerant. I was 12st 4 back in 2023 and Ive been 10st 8 since after the third attack. I eat a healthy mediterraenean diet, take no alcohol, drugs or smoking.
I do worry about the long term effects of the drugs, but I have not been offered surgery as an alternative.
Also, I find the information around ablations rather confusing. My NHS consultant said they werent terribly successful. And I have noted some on the forum have advised against surgery if possible. However, the cardio respiratory nurse I saw recently said she couldnt believe I hadnt been referred to hospital to discuss procedures.
I'm currently looking into a consultation through my BUPA health insurance with work. But rather sceptical of the whole private health industry and how to approach them for advice.
Any tips or advice would be welcomed from anyone who is in a similar situation.
Thanks for reading - have a great sunday
Written by
Afdrummer
To view profiles and participate in discussions please or .
I see a cardiologist privately but they are also working within the NHS so that would be my first tip - ensure the person you see privately also works in the NHS as although a consultation doesn’t cost more than £200-£300 the tests involved really add up, however if BUPA are paying you may not be too concerned! You may not get treatment any faster on the NHS but just having had the consultation helps inform and reassure.
Ablation is successful for many people but needing more than one is also common. I had ablation because I didn’t want to take drugs for the rest of my life and turned out there was good reason, drugs didn’t work and made me feel terrible, worse than the AF. But that is a conversation you need to have with your consultant who will have your medical history Drugs v Ablation as everyone is individual and medics vary in their views.
The consultant who said ablation is not very successful - were they an EP - Electrical Physiologist Cardiologist? If not they would not specialise in arrythmias. Ensure anyone you see is and EP.
Thank you for sharing your experience on this subject. That's appreciated. I have a Bupa membership through work, which does have an excess of about £200 a year for any treatment received. I'm still looking at EPs to approach. The best ones seem to be a long way from my home in Wales, so I am doing the sums on that.
The NHS consultant who prescribed my current regime is more of general cardiologist rather than an EP. A second consultation from an EP would be worth paying the excess for me. I will keep in mind to look at EPs working for NHS. Thanks again for the tips. Best wishes
Unfortunately Wales is underserved by EPs. Liverpool Hearr & Chest has good reputation or Bristol. Look on the BUPA site, they have excellent info on the doctors.
Liverpool Heart and Chest Hospital at Broad Green has an excellent EP and you can get a private appointment within a couple of weeks at Spire Wrexham or Broad Green.
At your age and with the way your heart behaves I would definitely be looking towards an ablation whichever route you follow, NHS or private. As you are probably aware AF does not go away and almost always progresses. With private medical insurance I would be looking to book an appointment with an EP to discuss procedures. I was on a higher dose of Sotalol which didn't control mine and flecainide made matters worse and gave me pro arrythmias
Hi, thank you for your advice. Yes, the 3 major episodes I had before being medicated were in the words of my cardiologist *pretty serious*. They were all around 240bpm in the emergency room, with very low BP, lost feeling in my limbs and almost blacking out. The first time, I was chemical cardioverted, but it took 48 hours in hospital to stabilise below 100bpm. the 2nd and 3rd attacks also required emergency room and electrical CV. - the 3rd time 3 x large shocks didnt work, following which an IV got me back in sinus within a minute or so, but it left me pretty shaky for a few weeks.
Since being medicated, I have had 3 or 4 muted epsiodes where my heart rate reached around 120bpm, so it's helped to control the rate when it does go off.
Hi don’t know which bit of Wales you live in but I am just over the border from N Wakes . Prof Gupta is supposed to be the expert in the N Wales. I saw him privately to get on the waiting list for NHS because I had been waiting 6 months for a clinic appointment. My mother in law saw him privately and had her ablation done privately within a couple of weeks . He works out of Spire Murrayfield Wirral . I have a friend who is a cardiologist locally and he also recommended Dr Luthor from Liverpool heart and chest , have a look
My usual cardiologist never mentioned ablation and pushed the meds route, but on an admission during PAF episode the cardiologist on duty was an EP and she was like, why on earth haven’t you had an ablation ? That’s when I started to look into it . The sooner you have it done the greater your chance of success apparently . Seems a lot of jobbing cardiologists try to put you off ablation. Doubt any of them are living with AF
Thank you for sharing your experience - this sounds remarkably similar to the experience I've had so far with the NHS cardiologist assigned to my ongoing treatment. I waited 4-5 months for a counsultation with them after my 3rd emergency admission. Then at the the appointment, I raised the idea of an ablation with them, but they kind of pushed back and said the meds were controlling things nicely. However, I feel drained a lot of the time which I put down to the high dosages. I appreciate though, that it's helping to prevent the very fast HR episodes I had previously.
I'd been reading the AFIB Cure book by John T Day which advocates for lifestyle optimisation, biomarker monitoring and early ablation, so I think a private consultation will be my next step.
I appreciate the recommendations above - I'll look into it. Have seen Dr Guptas videos, very good
How frequent are your episodes? Mine are so far about every two years but very symptomatic HR 187 with RVR. During episodes the drugs haven’t really helped and I told them I wasn’t taking a drug everyday for something that to date happens once every two or so years . They have one size fits all protocols . The Afib Cure has very good guidance but over here you wouldn’t get all the testing he recommends and I wouldn’t want it either . Man up the road has just had an ablation with Prof Gupta and doing very well. I like good news stories
Welcome! I was on almost the same Flecainide regimen as yourself: 150 mg. slow-release and an extra 200 mg fast-acting as when an AF-episode occurred.
I stopped taking the slow-release version, and… my episodes have been reduced to one in 2 months on average. I only take 250 mg Flecainide as ‘pill in in the pocket’ now when AF raises its head. Plus a betablocker to keep my heart rate down.
I stay away from invasive interventions like an ablation, for many reasons.
That seems a very high dose! When I was first prescribed Flecainide to use as a PIP it was for 100mg and always stopped episodes in a few hours, only very occasionally requiring the additional 1.25mg of Bisoprolol if my heart rate exceeded 140 twenty minutes after taking the Flecainide. Now that I take it regularly, I have been able to reduce the first dose of the day to 50mg and take 100mg late at night. It has virtually put an end to episodes for me but on a rare occasion when an episode did occur before I had taken the morning pill 100mg ended it in an hour. Of course, we are all different but I was told the maximum daily dose is 300mg and I think that is what is in the information leaflet that comes in the pack!
Perhaps he hadn’t read the information leaflet that comes in the packets of Flecainide. A doctor told a friend to thank me after it seemed he hadn’t read the information about suitable lower doses of anticoagulants for older people who weren’t overweight and she nearly died as a result of being on too high a dose of anticoagulant for her!
I’m quite sure he knew about the risks of Flecainide, as he’s a professor at one of our most renowned cardiologic centers. He also knew that he had to be careful with Flecainide after my heart attack. But after thorough investigation he decided that up to 400 mg would not kill me. He was right, but the pre-syncopes that went with this high dose were unpleasant, to say the least. So I chose to stop.
Very sensible of you! But what are pre-syncopes please as I’ve never come across them? As I have never had a heart attack I wouldn’t know about the difference it makes but if the makers write that the maximum daily dose is 300 mg one would think there is some truth in it! I have only had more than 200mg in one day on the occasion when an episode started around the time I must have been infected with covid and the extra 100mg as a Pip ended that in a few hours. Usually 150mg a day works fine at keeping my heart in order though it does affect my digestion a bit.
A pre-syncope often occurs if a high dose of Flecainide causes the QTc-value to increase. At the moment when AF reverses to sinus, the heart stops beating for about 2 seconds. Enough to create the ‘pre-syncope’ which is the predecessor of a full syncope, better known as ‘fainting’ I found the experience rather unpleasant so I stopped taking Flecainide as a daily pill altogether.
Re. *A pre-syncope often occurs if a high dose of Flecainide causes the QTc-value to increase. At the moment when AF reverses to sinus, the heart stops beating for about 2 seconds*.
I recently had a 7 day holter monitor fitted and got the report back from my cardiologist last week. In the report it says my heart rate was between 48-99 bpm during that week and stayed in sinus rhythm.
The report noted 4 relevant pauses with the longest RR interval being 1.7 seconds. Is this an example of pre-syncope?
There is no mention made of ablation in the report which states he will reassess my symptoms in April at the next appointment.
That's interesting. Yes, I was started on 150mg after my 3rd emergency admission last July - 100mg in the morning; 50mg in the evening. Plus the 240 Diltiazem daily. It worked ok up until new years eve, and since then I have had a couple of breakthrough episodes of 120-130 bpm which stabilised with a PIP. They increased me to 200mg after that.
I'd also prefer not to have surgery, but I'm looking at all options now, including discussing ablation with an NHS consultant via Bupa
hi. Others have commented re the surgical route but just wanted to give an alternative view. I have had PAF for 30 years. I have lived with the same drugs you are prescribed for that period too. After an introductory time the drugs maintain control and I became exercise tolerant again. Long term side effects have been zero over those 30 years. Hope this helps
That would be an exaggeration to claim but on average yes. Now on Apixaban as my score increased due to being 75+. Still able to exercise and in control in general.
I’m worried that you haven’t mentioned if you are on anticoagulants especially with a heart rate of up to 240. I was exactly like you to begin with snd was immediately started on apixaban (anticoagulant) snd bisoprolol (rate control)
Over the years I was then put on flecainide (rhythm control) and a water tablet as I’m now in permanent AF/tachycardia, but I’m 81 this year snd my paf started in my late 30s early 40s I am more comfortable now on permanent af and also have a pacemaker last year
I did have an ablation at St George’s very early on, but unfortunately it didn’t work (so many do I was just unlucky) then as I had 4 cardioversions which did help as the last two they had to zap a few times before it worked, they didn’t think another ablation would help
About a year ago my EP suggested “if I wanted to” he could try a different sort of ablation in Harefield hospital, , but after reading the 14 pages of risks snd he said my age was against me (?) I decided not to go ahead
You are young though and the quicker you have one I believe the greater the success
PLEASE enquire about an anticoagulant.
You really need a rate control together with a rhythm control as well
He is having a rate control - that is what Diltiazem. Great med see my note wuich saved me.
If you are persistent or Permanent rhythm control they told me is a 'waste of time' and Flec is risky and Diltiazem has a built in anti-arrhymnic action.
Aaah thank you. Is flec risky because it can cause other arrhythmias?? I tried to stop it when I went into permanent afib, but I felt worse donhospitsl put me back on it. Seems wrong to me , but….?
I think there is a special regime how you come off it.
Why did Specialist increase it .. flec and increased it again.
You could have 3 times a day Diltiazem if your heart rate is the problem.
A friend had a heart attack. He takes 100mg Metopolol! Then he has 360mg Diltiazem dividing it as 3 times a day @ 120mg to cover him.
Flec can add more different arrhymias. It will be trying to get you back into normal sinus but my specialists didn;t even try from the start as I was persistent.
Are you taking the flec away from Diltiazem? With a BB I was told to separate it by12 hours and because I could by taking 1 x capsule early in morning 8am. and my BB was at 8pm.
They are all asking if you are taking an ant-co-agulant. I take PRADAZA 110mg twice day. 10am and 10pm.
cheri JOY
What symptoms do you have if you cut it back? It shouldn't do anything to your H/Rate. It might change your rhymn.
Thank you! Yes I have also questioned why I'm not on an Anticoagulant.
Apparently my CHADS score is low so ive not been given one- also I had a stomach bleed 20 years ago, and have been on omeprazole for this ever since. Also my dad died of a ruptured stomach ulcer, so it's a bit of a risk.
Joy is correct - I'm on rate and rhythm control.
It's good to not be having emergency admissions, but there is a price to pay in my overall lethargy and limits on exercise/physical exertion. For example, I have only played the drums once since before june 2023. Last time i did this I had an emergency admission the next day.
Thanks so much for your input, really appreciated - good to hear how you have managed the condition so well
I was diagnosed with STROKE embolic type, rapid and persistent AF, and then 4th day Thyroid papillary cancer(in a carotid arteries check scan).
On Metoprolol H/R Day was 186, breathless, couldn't exert, sweating and pauses at night.
Changed to Bisoprolol H/R Day was 156, no breathless, no pausing, improved but no control on H/R.
Both 24hr Heart Rate Monitor recorded a normally low H/R of 47avg bpm regardless of med.
I took heart pill/capsule early and 1 hour after my very early thyroxine - replacement synthetic hormones.
At 2 years 3 months my Locum suggested a private H/Specialist. She referred me.
He was interested. Read history and quickly decided as at rest I was H/R 130 plus.
He immediately put me on 180 CD mg Diltiazem. In 2 hours I went from 156 down to 51.
I was light headed so a call from the NZ Heart Nurse to the private Heart Specialist. My med was reduced to 120 CD mg. Reduced Bisoprolol to 2.5mg.
But in December I had to drop off Bisoprolol because of low BP.
So much better, feel free, sleep only at night. Great.
CCB Diltiazem is a wonder med.
You are still taking less than the full med 360mg CD.
At 240mg it is guarding your heart rate throughout the day. Mine runs out during afternoon but that is what I need as a drop down to 47avg bom continues and the 24hr Heart Monitor check. All was great and still showed the H/R under 100 and 47avg at Night.
Flecainide is for your rhythm.
They told me that H/R was more important controlled than worrying about the rhythm.
In actual fact Diltiazem acts like an anti-arrhymic med. Safer, yes.
I would question Flecainide at that level. I'd ask for a 24hr Heart Monitor. Its the truth of what the meds are doing for you.
If your H.Rate is controlled throughout the day and night so leave that aside.
First control your H/Rate and control your BP. Diltiazem does both but more so H.Rate.
Did you have Heart Symptoms? Before Flecainide?
As mine is persistent I don't motice any change as always in AF.
Check it all out. It's always good to have a review on meds. With abnormality of structure to my heart I can't have cardioversion, ablation or Flec.. an anti-arrhymic med.
Take care. When was the last ECHO you had. 2 yearly is normal.
Thank you Joy, good to hear your story and that Diltiazem worked for you.
Yes I have just had the report back from a 7 day holter monitoring at home. It seems to be ok with the meds, HR between 48-99bpm.
There were 4 relative pauses recorded -the longest being 1.7 seconds. Not sure if this is being caused by the AF or the Meds, or what it indicates.
My last ECHo was June 2023 and it showed my heart is normal structurally. Cardiologist says most patients he sees have a lower rate of AF (up 140ish) but with me its over 190 and upnto 240, which is difficult to treat - all he can do in this situation is shock me.
I had 3 x emergency addmissions in 13 months before they started the daily meds- 1 chemical cardioversion and 2 electrical cardioversions were required to get me back to SR. My BP was extremely low when in AF at the hospital - around 80, instead of 130 normal BP. The blood flow was not fully reaching my arms and legs and I was almost blacking out at that point so it was pretty bad.
Looking into all options and researching consultants to approach.
Make an appointment with a cardiologist who has also trained to do ablations (called an EP = electro-physiologist). Be sure it’s one who has an NHS practice, too, at a suitable hospital.
Keep in mind that AF is at the top of the heart where it does little if any long term harm but can reduce heart efficiency. Tachycardia is the enemy. This reduces heart efficiency much more and can cause BP to drop and that can cause a whole range of weird feelings and some breathlessness.
Given the rate of your AF, which is unusually high, I would press for an ablation. Few BUPA clinics do these outside London, I believe, but most large NHS hospitals do and some allow private procedures (free on BUPA otherwise, c. £15-20k). If you’re lucky yours will do PFA “pulsed field ablation”), which is much quicker and safer. If you don’t need a general anaesthetic, waiting on NHS lists might be 6-9 months; with GA (as my case) over a year.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Recently diagnosed PAF - advice support
How do we define a successful Ablation 
What to do? Advice needed please.
Flu jab & PAF
