Unpredictable AF: I'm age 57 on 2,... - AF Association

AF Association

23,581 members28,560 posts

Unpredictable AF

Simoni profile image

I'm age 57 on 2,5 Bisoprolol once a day, and Flecainide 50mg twice a day and I get episodes of AF off and on...for no particular reason....its so unpredictable....

For example this morning i rode my bike 3 miles to the parkrun, after riding steadily up a slight hill, going down hill i felt the chest flutter and went AF, nearly turned and went home, but didnt as i knew id be brassed off all day, so carried on to see if it reverted..it did..

I did the 3 mile parkrun, very steadily compared to what i used to do...with solid HR no AF ....very low hr because of the Bisoprolol, but no AF....seemed like the running banged it back in NSR......rode home ok.....so frustratingly unpredictable..

I've got another appointment with Cardiology in 2 weeks so will see what they say, i am tempted to have ablation but really apprehensive, but i would like to try and get off the drugs completely as they make excercise so tough with the very limited heart rate, not allowing oxygen to the muscles....even at the very low level im excercising at these days.

Anyone else get these type of random af attacks?....

so frustrated...!

34 Replies

Hi Simoni,

I got the occasional breakthrough until I was put on Flecainide 50mg 2/day. The next breakthrough I had on 50mg I asked the Cardiologist if he could up my dose to 75mg 2x which he did and haven't had a breakthrough for several years. He was going to up it to 100mg 2x but I argued that I could get a 150mg pill and cut it in half and I would have some where to go if I had more break throughs as Flec maxes out at 300mg per day.

He also told me there is continous improvement in the alblation procedure so the longer I could put it off the better. Best of luck.

Cookie24 profile image
Cookie24 in reply to jwsonoma

Did you cut an extended release tab in half?

jwsonoma profile image
jwsonoma in reply to Cookie24

I cut the Flec in 1/2 and 5 mg bisoprolol in 1/4

It’s a tough decision. How often do you get AF per year? More than once a month? And is your CHAD2VAS2 score zero? Maybe try a calcium channel blocker instead of bisoprolol

Simoni profile image
Simoni in reply to Thomps95

Af in and out most days unfortunately..what does a calcium channel blocker do?

saulger profile image
saulger in reply to Thomps95

Hello Thomps95. I am a paroxysmal AFib sufferer with 3-4 episodes per month lasting several hours. I thought that if you have AFib then your score is automatically one. Being 75 this year will bring it to 2, without co-morbidities.I am low BP and low HR. Would a calcium channel blocker help ? Thanks.

In my early days of AF- always completely random. If you read back through my posts you will see I had a few adventures with AF at altitude whilst attempting to ski, all at sea in a small boat, on trains and planes and I thought I’d found a few triggers, then they would change. Unfortunately I couldn’t exercise when AF struck because my BP would plummet so just staying conscious was sometimes an effort.

Having been through the drugs, which controlled AF for a short time but with so many affects that I couldn’t function, I went for ablation. 2nd ablation abolished AF for 3 glorious years but it slowly returned, by which time I was well into my. 60’s.

As a last resort I went for pace and ablate but the pacemaker option worked so well that never went through with the ablation of the AV node. Since implant the only AF I’ve had was when they disconnected the PM for amendment and 3 episodes when I had infections - which still trigger AF but because my HR is regulated by the PM I’m hardly symptomatic at all which has improved my quality of life enormously.

I offer the potted history to illustrate that persistence can pay - keep on keeping on and eventually you may find the magic bullet for you.

Ablation helps many but it isn’t always straightforward and often requires 2 attempts but if you are under 50 and fit and able and moderate lifestyle, which sounds as though you are doing, good chance of success so ask your doctors - but make sure they are EP’s with plenty of experience of ablation, not general cardiologists.

You may find this 13 point blog on AF and whether or not to ablate helpful - I did.

drjohnm.org/2014/02/13-thin...

PS- If you haven’t already - 2 books which have helped many

The Haywire Heart - Dr John M - drjohnm.org/ - writes from the perspective of exercising as he’s a cyclist.

The AFib Cure (there isn’t one but it got the attention) drjohnday.com/

Many of us have read his book and found it helpful as good guide to what bloods to monitor, what questions to ask and what eating plans help.

I hope you would also look at the AFA website as lots of info there and I learned more in 1 day at Patient Day than I had in 7 years of trying to get answers from doctors - learning the questions to ask is as if not more important than just listening to opinion from one doctor, however brilliant they are, simply because no one knows everything and opinion on drugs and ablations differ so having the knowledge to ask the questions is essential - in my opinion.

all the time!Hi there,

Totally random this is my everyday life. I can be sitting at the laptop, cleaning the house, sleeping at night and wallop! Off it goes and sometimes lasting all day. So debilitating in as much as I find when it starts in the day and lasts all day, I'm so very tired.

I'm not a sitting doing nothing person, I'm painting all the woodwork in my kitchen at the moment and doing so on my own and fingers crossed the AF situation has been ok....so far.

Yes the randomness of it is hard at times.

I'm on 150 flecainide twice daily and 5 bisoprolol every day.

See what your cardiologist says and your lucky you have an appointment.....not seen mine in over 2 years now and that's after being admitted to hospital a few months ago with a suspected heart attack!!! Thankfully it wasn't so. They say there's been and I quote "damage done to my heart having had radiotherapy left side after having breast cancer " in 2015.

you stay well and keep enjoying the cycling!!

Blue :-)

I can start sitting quietly doing a crossword, but have just struggled up Mam Tor in the Peak District complete with 100 Flecainide in my pocket, nothing.

I take 100 Flecainide morning and evening and 1.25 Nebivolol. EP said I could go up to 150x2, but worried I’d have no wiggle room. Have had 8 good months before the odd episode has started again.

Mine are random and, mostly, very brief indeed. I feel sure they are linked to my digestive issues (I have a hiatus hernia). I think I would have an ablation if your doctor felt that was the best course for you. It depends, I suspect, on whether they know what is causing the AF and whether an ablation would do anything for this - but an early ablation seems to be the thing these days, even though the evidence seems to be that 2 or more might eventually be needed,

Steve

saulger profile image
saulger in reply to Ppiman

Hi Steve. I also feel that my digestion plays a part. During an episode I am bloated and expelling air from both ends. Do you think that specific food intolerance may be to blame ? Thanks. Saul

CDreamer profile image
CDreamer in reply to saulger

The only way to really track down if food plays a part is to keep a very detailed food/symptom diary.

Bloating can be caused by a number of things, including an imbalance of gut flora so worth investigating further before going for other treatments. Most obvious candidates are sugar, carbohydrates - especially cakes/biscuits/sugary drinks and including starchy root veg, all ultra-processed foods.

The FODMAP diet helps some, didn’t help me but is thought to be effective in about 50-60% of people. Cutting out all dairy and gluten for 12 months helped somewhat - I now just limit what I take.

This is a very generalised article but outlines the basics. If you can get your gut back into working order you would be surprised at how many other ailments will improve or even disappear. I’m a great one for cultured foods and take the recommended 3 per day and that has helped me more than anything.

healthline.com/health/gut-h...

saulger profile image
saulger in reply to CDreamer

Thanks a lot, CDreamer. I will chase the link that you kindly provided.I follow you posts on the forum and they are detailed and helpful.

My partner often forgets what ingredients to leave out and yesterday I had a long and very symptomatic AFib episode after eating onions in the vegetable stir-fry...I must do better !

Ppiman profile image
Ppiman in reply to saulger

I have less belief in food intolerances, I'm afraid. I worked for many years for two pharmaceutical companies that specialised in allergies and, in that time, spoke to many doctors about this. One thing that has been shown is that most allergies aren't allergies and that when challenged double blind, the effects don't always correlate (i.e. the intolerance can't be proven).

What I think perhaps more often happens is that the digestive system can be slow and, as a result, create more gas; or that peristalsis can be more pronounced because of IBS or diverticula issues. These can push the whole system upwards towards the diaphragm and heart.

I am sure that some people do have intolerance to some foods. It just has to be so, but perhaps nowhere near to the degree the expensively lined "free from" shelves in supermarkets suggest. As with our need for an ever-present bottle of hydrating liquid, aka, water, it seems to me it easy to become obsessed with foods and "triggers".

Steve

saulger profile image
saulger in reply to Ppiman

Thanks a lot, Steve. I think that I have bowel issues that are causing my sudden attacks. I previously had attacks after eating cucumber and onion, and yesterday I unknowingly ate onion in stir-fry vegetables and less than two hours after, I was expelling air, for hours, from both ends with an irregular heart rate in the 120's.

I can find no other explanation.

Perhaps you could suggest what tests I might have to identify the issues that I have?

As CDreamer wisely suggested I must maintain a diary of events and dietary links.

Thank you for you kind reply, Steve.

Ppiman profile image
Ppiman in reply to saulger

I think the diary idea makes sense but in my experience of this you will not be able to point to the food that is troublesome since the delay between eating and the effects caused is too long. It might even be worth trying to alter your "biome" as it's now mysteriously called, but you don't need to buy any expensive "gut bacteria" whatsoever to do this, only increase the amount of soluble fibre you eat, such as oats, apples, nuts and similar. The problem is that doing this can set off spasms and IBS and... gas!

I tend to believe that physical causes for things we feel are the most likely, but that some of these become massively magnified by the mind, leading then to a vicious cycle caused by anxiety and fear leading to muscle tension and such like. Issues arising from the digestive system seem to be notoriously difficult for doctors to pin down (but are the stock-in-trade of alternative practioners!). For instance, I have reflux and a hiatus hernia, but knowing that doesn't get me very far since both are well controlled and yet I still have issues with my heart that feel, to me, to be directly connected.

In the end, we soldier on with the rather cold comfort of knowing that things could be much worse. ;-)

Steve

saulger profile image
saulger in reply to Ppiman

Thanks again, Steve.

I was a relatively fit 72 year old. Normal BMI, low BP, low resting HR, no co-morbidities. Retired in Greece - not a care in the world.

I had a bad fall onto my back clambering over dry stone walls in a Greek Island (Kea), late 2017 and in early February 2018, whilst being extremely constipated and partaking in a rowing race, had my first AFib episode and had to lay down the oars (actually an ergo).

My father had heart problem and it runs in his side of our family.

I had irregular HR on many occasions at university and also thereafter, so it's something genetic, I suspect.

Having said that, I am trying to eliminate foods high in FODMAP and some that I can't tolerate that may trigger my discomfort and lead to an AFib episode.

I am sad that I can't eat all the foods that I love: avocados, plums, apples, corn, peaches, dates, nuts, seeds, wine, beer, coffee, beans, etc. etc.

But, if no more AFib episodes, I will be happy.

I hope that your heart issues are under control and that any AFib episodes are infrequent and not too debilitating. All the best, saul.

CDreamer profile image
CDreamer in reply to Ppiman

Food intolerances are not allergies and more related to what bacteria is in our guts - see the work of Prof Tim Spectre on gut biome and immune system for example.

The world has thankfully moved on. I also worked for a Pharmaceutical company for a while and that experience solidified my interest in complementary medicine and how to heal myself through food.

Ppiman profile image
Ppiman in reply to CDreamer

I know his work well. It's a fascinating area. The difficulty with food "intolerance" is that many people are being misled by marketing, and would be far better following the science. Double blind challenges are always highly revealing of such "intolerances".

The existence of such as homeopathy shows the potential for irrationality to override common sense and science.

Steve

CDreamer profile image
CDreamer in reply to Ppiman

Trouble is that few bother to go to research and much of the science is contradictory anyway. There is a lot more interest in Nocebo these day and I’m very interested in that - which is very evident on this forum. Unfortunately as we start to understand complex systems and realise that it’s not just mechanics, it becomes much less clear cut so people don’t know who or what to believe and want a quick fix.

I’ve tended to go with ‘let’s see what works for me’ attitude, try and make informed choices, read and listen to those with a lot more knowledge and experience.

I had a gut analysis which found I had overgrowths of 2 types of bacteria which basically caused my problems. That was on recommendation and supervision of my GP who is dual trained on such issues and definately follows the science, which seems to change quite regularly so keeping up is not easy.

Elimination of bacteria which caused toxins was by taking tannin and garlic supplements. Maintenance has been eating green fibre to feed useful bacteria and avoiding foods such as sugar which feed toxic bacteria, a strategy which has worked so that I now no longer suffer bloating or any gastric issues and if my gut is healthy, then I am happy.

Ppiman profile image
Ppiman in reply to CDreamer

Well, you’ve always sounded to me to be as on top of things as can be. A sceptical but practical mind is the best. I don’t think the science is as confused as you’ve found but I do know what you mean. I suspect we are chasing the unfindable at times and the complexity of systems is creating a mass of research possibilities but not always much of practical use. There’s unlikely to be a way out of that, though, although AI might be the way.

My son is keen on these things, too, so we often compare notes.

Yep.I'm convinced they're random, just because they can! I know my triggers.

Dehydration, stress (sometimes you can't help that), overdoing the exercise, being overtired, a heavy meal, sugar, steroid injections in my knees.

Who knows?

Anyway, I have a pacemaker to stop my HR going too low and Sotalol to stop it going too high, and apixaban.

My brother had 2 ablations in 2013 and no problems since. Mum had a pacemaker.

I hear you with the running - my knees won't let me, so I use my rowing machine. A steady 6k will knock me back to normal rhythm, not pleasant but it works.

My rate stays low, so sprinting on the rower is off the agenda now, it was frustrating at first but the general fitness I've improved has helped my heart health generally and my lung clinic has now discharged me.

Ask cardiology what ALL your options are - we're all different and my family have proved that what works for one may not suit another.

Take care

saulger profile image
saulger in reply to Sewnknit

Dear Sewnknit. Hope that you are well. I also row on my rowing machine. I tapered down and stay on 2:25 / 500m for 30 minutes, usually without a problem. Three days ago, I felt a switch and my chest HR monitor showed an instant jump of 20 bpm and I immediately stopped and avoided an AFib episode.Did I understand that when you are in AFib, a 6km row (about 30 minutes for me) will get you back to NSR? Would love to hear your rowing story. Saul

Sewnknit profile image
Sewnknit in reply to saulger

Well, it's a bit of a balancing act. I did a Concept 2 challenge in April where you increase by 1000m everyday for 15 days. I got to the 13th and 13,000m and it kicked off. Decided 10 was my limit. When I do my DIY cardioversion I just row steadily at about your pace or slightly slower. I don't know if it is the rhythm, the breathing or just focusing on all those things. My rate peaks and drops and eventually drops down to my usual rowing rate of 115 bpm. I have a mental cut off point of 180 bpm to pull the brakes but have never needed it.

The last one was odd, in that it was going down rather than up and then got to 115.

It isn't pleasant and doesn't happen very often. The cardiologist I had a phone review said it was 'very interesting'. If the frequency increases then it's back to clinic for another review (possible AV node ablation).

DIY cardioversion
saulger profile image
saulger in reply to Sewnknit

Thank you so much for this. I am very fearful but will try next time (had an episode yesterday after just eating onion). You must be very young to be rowing at 180 HR. My max HR is 155 and I stayed at 140 or less. Nowadays just 120 max.In 2010 I got the silver at the Concept 2 Athens Indoor Rowing championship 3:46.6 for 1000m aged 64. Did you ever try rowing on the water ?

All the best.

Sewnknit profile image
Sewnknit in reply to saulger

180 is when I would stop, it is the max I could cope with, without feeling I was going to fall off the old perch. I normally row at a steady 115bpm. I try to keep to 20-24 spm drag at 98.

The episode that was bought on by rowing was probably the distance.

It is not nice and the 7 or so times I've done it have worked. I really don't want it to become a habit!

Never rowed on the water apart from a bit of a paddle in a kayak. We have his'n'hers concepts in the garage and himself had a series of heart attacks last year so we try and stay safe!

I can't give any advice, I read that for some people exercise can be a trigger and for some a cure.

saulger profile image
saulger in reply to Sewnknit

Saul again. From your graph I see that you are rowing at roughly 28 spm. I row at a much lower stroke rate 16-17 and a fairly low damper setting: 89 Drag Factor on my Concept 2. Do you feel that the stroke rate and resistance could play a part in bringing on the AFib?

I agree with jwsonoma on this. I went straight from 100mgs to 200mgs Flecainide which stopped it 7 years ago; maybe 150mgs would have worked the same. I am 68 now active with Lone PAF and have never taken Biso or other accompanying drugs as lowish BP & HR.

Mine were also random. No specific triggers. I was given the option of meds or ablation route right at the start. I was having events most days lasting 5 or 6 hours. I opted for ablation, took bisoprolol for six months whilst on the waiting list and hated it. Breathlessness when I exerted myself. I had my one and only ablation in 2013 and still free of af and meds. Recently having some palpitations so maybe returning 😳 but so far so good.

Making the decision is the hard part.

Good luck ☘️

Mine are random. I can continue my normal life with an attack. I find that if I walk, then have a meal, maybe a drink and it’s the end of the day then that’s just too much and triggers an attack. But they can come on just resting. I have a slow heart rate so cannot take any medication but am on apaxiban. Flecanaid was altering my heart waves. So they had me down for an ablation but have now said they don’t think it’s bad enough to carry one out at the moment. So am stuck !

I am afraid you can't predict when you are going to get an AF episode. Having said that I often had episodes at 2 am . I am sure this was down to Bisopropol. Dropped my heart rate to a new low. Flecainide and Bisopropol did not do me any good but I appreciate they are a lifeline for many AF patients. Ditched both drugs and opted for ablation in 2018. Best decision I have made.

Thanks all for the feedback...really useful to hear other peoples af patterns..or lack of a set script as far as af goes..like i said before its horrible to no more be able to do what you could...such is life..i suppose ill have to settle for the new normal and do what i can when i can...im not happy about it...infact its quite depressing😢 i may have to go for ablation if the EP thinks id be suitable...even tho im not happy about the risks of the precedure...🤔🤔

saulger profile image
saulger in reply to Simoni

Hello Simoni. Don't admit defeat. There are lots of steps to take to offset the onset and effect of AFib episodes. Normal weight and BP, dealing with co-morbidities, avoiding stress, avoiding big meals and eating late before bed, sleep control, exercise, diet and much more can raise our QOL.

Although the NHS will not fund it, the Wolf Mini Maze performed in Houston by Dr Randall Wolf (the originator), is a more invasive procedure than catheter ablation to eliminate AFib. It is reported to be 95% successful after many years, and includes the clipping of the atrial appendage where blood clots can form during an AFib episode.

One time and no medication !

Join their FB group and read the patients' personal journey out of AFib.

facebook.com/groups/4129396...

All the best, saul.

You may also like...