Atrial fibrillation: I have had this for... - AF Association

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Atrial fibrillation

Jacky01
Jacky01

I have had this for several years and am no clearer in understanding this condition

70 Replies
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BobD
BobDVolunteer

Welcome to th club. 16 years and still learning. Ask anything and we will try to help.

Join the club! I had paroxysmal AFib for years and I thought that was what AFib was. However, I've now learnt there is

AFib with fast ventricular response where the ventricles beat at the same rate as the atria, that was me

AFib with controlled ventricular response where the ventricles beat at a slower rate than the atria which are fibrillating

Maybe there are people who have both types

Paroxysmal where the AFib comes and goes from time to time. This can happen occasionally, every few months or every day. Each episode lasts for less than 7 days, usually less than 48 hours, or for a few minutes but always stops naturally.

Persistent which often gets mixed up with permanent on this forum. That's when you have AFib for seven days or more. Or it needs cardioversion through electrical or chemical? means.

Permanent or 'Accepted' is where the AFib is not terminated and patients may or may not be given drugs.

Then there are the drugs, rate or rhythm control. Only rate control drugs can be given by GPs. Bisoprolol is one of them and it made me feel worse because it lowered my heart rate when I was in normal sinus rhythm. For rhythm control you need to see a cardiologist. It now seems to be accepted that rhythm control drugs like Flecainide are better rate control drugs.

Then there are differences in how people feel while in AFib. Some are asymptomatic and it doesn't really affect their lives. Others can be affected - mildly through to very badly.

Where do you think you fit in? You've had it for several years so I guess you are relatively asymptomatic like I was.

ijregner
ijregner in reply to Physalis

Well said

Jacky01
Jacky01 in reply to Physalis

I generally have an episode every 6-7 days which last about 24 hours. My day is usually useless as get very tired and I can only cope with menial tasks. Also makes me quite depressed at the time, probably because I have no control over symptoms and length of time. Possibly got worse in length of time between episodes as I've got older. Difficult to plan life ahead as making appointments etc never know how I will be on the day. Do I feel I have only half a life - yes but lucky that in between episodes I can do probably more than a lot of other people so got to count upside of it all. Don't think a lot of people understand how depilitating this is as look quite normal on the outside

Coeurdelion
Coeurdelion in reply to Physalis

Wow. I too have paroxysmal afib and have taken an interest in finding out about it as best I can. Your post is very interesting.

In the ‘Pinned Posts’ to the right of this page there are 2 helpful posts, “Useful links for Newbies and Oldies” and “NEW programme from AF Association. Well worth a read!.....

I have had ectopic for nearly 40 years and paroxysmal af for 10 years still do not understand why there is no specific and permanent cure Mike

Buffafly
Buffafly in reply to wbekim

Because until recently drs had it in the same file as IBS, the common cold and symptoms of old age - either a nuisance or something to put up with. I’m cynical I know 🙄 So serious research is fairly recent. There is a sort of cure - pace and ablate - but not popular!

Coeurdelion
Coeurdelion in reply to wbekim

same here wbekim. Does anyone have any information on any of the recent tests for different treatments doing?

cuore
cuore in reply to wbekim

Doctors have been able to detect it via an ECG (also named EKG). They have defined it as an electrical problem of the heart. The word "cure" can be defined in many ways. Some will define it that it never comes back. Others will deem it the period of time after an ablation that stops the rogue signals whether from pulmonary veins only or from within the atria itself.

To approach the problem of never getting it in the first place generally with lifestyle does not include those that are genetically disposed for it. Therefore, the approach is what to do after one gets AF to stop these rogue signals. Electrical signals cannot pass over scar tissue which is why scarring is the current method used, either radiofrequency or freezing.

Currently, clinicians are trying to move away from scarring to directly address the source of the rogue signals. The latest focus is Pulsed Field Ablation.

According to Dr. Atul Verma:

"Irreversible electroporation, or pulsed field ablation, is completely different from the traditional heating or freezing energy sources that we use. It delivers electricity into the heart cells in a pulsed fashion; several very small pulses of electricity are delivered into the tissue and cause the tissue to selectively be destroyed in the areas that we want to destroy it without causing any heating or cooling. It’s what we call a nonthermal energy source."

So, rather than scarring, the technique is designed via electricity to destroy the source of the rogue signals rather than stopping the rogue signals via scarring. The success rate is extremely high. The technique is still in its trial stage: we are 2-5 years before its becoming readily available.

Because you are paroxysmal, you could be a candidate. Those in persistent AF are out of luck at present.

Hopefully, my diatribe gives you more insight.

Jacky01
Jacky01 in reply to cuore

That was both fascinating and informative thank you

Buffafly you are so right! I have a friend who has same problem but different Dr and the way she is looked after is totally different to me. She has been on Flecenide for a long time and rarely has an episode. I've never been offered anything else but Beta Blockers. Mentioned this to my Dr who said he would put me forward for relevant tests then changed his mind!!!!!

Singwell
Singwell in reply to Jacky01

Jacky it is your right to request those tests! You can legitimately insist on a referral, do so in writing if necessary. It's very important for quality of life that we take control of what we can in AF. Otherwise as you've said - how can we look forward? I've been there. I'm.going to post a response lower down in case others find it useful.

Jacky01
Jacky01 in reply to Singwell

Thank you singwell. Have found this site very encouraging in only a couple of days of joining

Singwell
Singwell in reply to Jacky01

Helped me a lot. I got very depressed earlier this year.

cuore
cuore in reply to Jacky01

Challenge your doctor with the EASTAF NET trial. Your doctor is not up to date. The first line of defense is no longer considered rate control, but rhythm control which is what your friend is on via Flecainide.

I was only diagnosed with AF a couple of months ago, and the doc in the hospital described what it was, gave me rivaroxaban (already on betablockers) and sent me home. Spoke to my own doc next day, and asked what would happen in the future, and all he said was if it started to ‘do my head in’ go and see him. So I don’t know whether I should have a regular blood test with the blood thinner or what. I’d like to talk face to face, but no appts at the moment, it’s all online. Feel quite envious when I read posts here about some people who have cardiologists etc.

At the top of the page, on the right side, under Pinned Posts is a link to the NEW Programme for the AF Association. Go through that, step by step. It will explain why you don't need a blood test and all sorts of other things. I actually did it yesterday just to see what it was about. It's pretty good. I wish I'd done it at the start. All good except for the last video which is too down-beat and dreary. I wrote and told them they need to end on a more positive note as it's not all doom and gloom for us.

Jacky01
Jacky01 in reply to FancyPants54

Thanks for info will look into it

Thank you FancyPants54 have read some of that. Far more help on this site than you get from your own dr., but they don’t have the time to concentrate much on each patient really. That’s where this forum is so helpful.

You can go back to it at any stage and watch the videos etc. It is a helpful guide.

I'm also on Riberoxaban (3 Years now) was told a year ago I should have blood test every year

Rubymurray25
Rubymurray25 in reply to Jacky01

My Doctors surgery appears to be to update in most areas and I would say well organised and all I get is an annual phone call re my Rivaroxaban just asking a few basic questions. I remember getting my first prescription from the pharmacy in Sainsbury's about 4 years ago and being asked if I minded if they called me in 4 weeks to make sure I hadn't had any nosebleeds or other issues as part of some research. I did actually get nose bleeds in the first 2 weeks but fine ever since.

Thanks for that, I had no idea, but good to know. I have a friend on warfarin, and he gets checked every few months. Not had any nose bleeds thank God.

If you read past posts on this Forum, you will be in a much better position to understand the condition and challenge where necessary the medical advice you receive. Its a steep learning curve but well worth it! Good luck.

Jacky01
Jacky01 in reply to secondtry

Will take your advice, every little helps

Hi Jacky I feel your pain and frustration! AF can really interfere with our lives but there are things we can do. I have not yet found anyone who can explain causality of the condition other than 'some people develop a propensity to it'. From some of my own reading I think it might be that due to lifestyle, general health, diet etc we get a fault in our DNA and incorrect messages are sent out to the heart's pacemaker by those cells. I think I've understood this right but others here may know more. DNA does renew but less quickly as we age. Hope I've got that right too! Many of us notice dietary triggers - I'm one of them - but I will say that even with changing diet and lifestyle sometimes episodes still come and this appears to be the nature of the beast. I had a long chat with Dr Timothy Betts, last week, one of our leading electro physiologists and Cardiologists. Paid appointment I might say! He's the one who recommended Flecainide. He told me AF is all about management - and it is US the patients who need to develop our own best management plan. Some people tolerate their episodes well, others do not. He told me - if you find the episodes distressing, uncomfortable and you're unable to get on with your life - if PIP or an extra PIP stops them, take the extra dose right away. He advised me on limits of course and suggested extra dose. I learned from him that medics don't have a clear pattern of why people get AF. There are academic papers out there of course but those who are treating us are on the coal face and tend to see things differently. Unfortunately not everyone on the coal face keeps really up to date with best practice is my opinion. GPs can be very behind. Dig your heels in and see if you can improve your situation. It's all about what works best for you.

Jacky01
Jacky01 in reply to Singwell

Entirely agree with you. Have studied myself over years reference diet, exercise etc without coming up with any answers. The only thing I do know affects me is stress, in a big way. Hey ho onwards we go.

cuore
cuore in reply to Singwell

Sorry, Singwell, DNA stands for Deoxyribonucleic acid, and it neither renews nor gets a fault via lifestyle. It's what we are born with, what defines our genetic make-up- how we are put together. However, in terms of AF, scientists are finding ,through their DNA, some people are predisposed to get it. That does not necessarily mean they will.

This article may be of interest:

ahajournals.org/doi/pdf/10....

Singwell
Singwell in reply to cuore

No need to apologise. I'm trying to work something out from my readings on how we develop disease or conditions. I'm happy for the input. Since we're not born with AF then the question is how and why we develop a propensity for it. That's my question.

cuore
cuore in reply to Singwell

Some clinicians are looking into the field of genetics to answer that question. But, like cancer, there is a long way to go.

cuore
cuore in reply to Singwell

I neglected to compliment you on your curiosity. Great breakthroughs are made when people try to figure things out.

Singwell
Singwell in reply to cuore

Thank you kindly. I did a PhD late in life and got a taste for enquiry. Now is better read that paper you've shared...

cuore
cuore in reply to Singwell

I am on board with you Singwell. I got my PhD in my late thirties, but never professionally functioned as such because Canada was unwelcoming for my field, and, due to family reasons, I did not have the option to leave. I lost my career.

So, my training went dormant for years until I realized my GP (primarily trained by the cardiologist to whom he sent me), that cardiologist , plus the punishing wait times for non-threatening life conditions , such as AF, in the Canadian medical system, all failed me. So, I packed it in and went to Bordeaux, France where three ablations later have now kept me in sinus for 15 months.

I could ferret out the information, compare the literature, analyze, come to conclusions, and finally challenge them all -- the not up-to-date GP, the useless one appointment cardiologist who did me more harm than good, and finally the EP who was going to complacently let me become permanent when I was already 5 months persistent. AF begets AF , the more you have the more you will get. Persistent AF is a ticking time bomb.

June 5, 2017, I had the EP appointment , again 5 months persistent, whereby I challenged him by saying I would not have my ablation there. Frantic, speedy research led me to Bordeaux, France whereby one month later (July 3rd), I had my first ablation at 6 months persistent. I paid for it myself as well as the next two because the wait time had left my heart so badly remodelled. I was told that I was one of the most complicated cases at the 6 months stage, defined by the first ablation, and if I had not had it then, I would never have been able to return to sinus.

It truly upsets me when I read about patient led down the persistent path, when earlier, better, and correct treatment was and is available, especially with access to the more recent trials.

I don't know what your research approach is, but viewing "how we develop disease or conditions, " for me, would mean limiting the readings to AF. Next, I would make a judgement call on whether to focus on how we develop the disease or conditions developing the disease, granted they can become interchangeable, but then the "why" would have to be explained.

In terms of developing a propensity, I would look at the genetic trials that are being done for AF, such as the site I have already sent you. I do not know if there are only trials of afibbers who do not have a genetic predisposition for AF.

I would interpret your question of "how" by focusing on lifestyles. There have been trials on obesity and AF.

Now correlating "how" and "why" through reading is a real PhD challenge, especially since there may not be enough trials yet upon which you can draw in order to arrive at definitive conclusions.

Anyway, those are the thoughts that went through my mind . Love to know what you come up with.

Singwell
Singwell in reply to cuore

Gosh, quite a journey with life and the AF. Sorry this hear about the hard parts but you didn't give up and were on your own case. You E raised the question in my mind again as to early/later ablation. Professor Betts was specific that extended episodes do not stretch or damage the heart muscle unless AF very fast e.g in 200s and therefore tachycardial for say more than 24 hours. He does seem very good but I'm keeping my door open on ablation and - like you- will fund myself if needed. NHS so slow at present - been offered an EP appointment in December because I live on the Welsh borders.

cuore
cuore in reply to Singwell

Are you saying that you have episodes less than 24 hours, then you might want to read this:

jamanetwork.com/journals/ja...

Definitely, if one should have an ablation, one must definitely not get to the persistent stage because rogue areas beyond the pulmonary veins develop monthly:

afsymposium.com/library/201...

Dr. Haissaguerre of Bordeaux and his team first performed the ablation technique used today.

Singwell
Singwell in reply to cuore

Thanks Cuore. Only just picked this up. TBH I don't know if mine are less than 24 hours because I've had 5 altogether and for the first two went to A and E within 24 hours and for the other three took extra pills. Apparently this makes me paroxysmal. My Kardiamobile tells me that the rest of the time I'm in NSR. It'd tell me if not. My brother is in permanent AF and it registers on his ECG. I'll check out the reading though. Much prefer to be informed!

Me neither - nor the medical fraternity, really, although lots of work seems to be being done. The trouble with the body is that the deeper you look, the more complex the issues become. The current Covid-19 pandemic has shown just how much more needs to be learned about the way some viruses work in some people to cause a tragic over-reaction of the body's defence systems.

I would say that arrhythmias are caused by a "weakness" in the nerve conduction fibres inside the walls of the heart, allowing for "misfiring" or poorer control.

Steve

Jacky01
Jacky01 in reply to Ppiman

Agree with you Steve. When one visits Dr I don't think they know enough to give you the answers you are looking for simply because they themselves don't have the answers 😟 In the early days I used to go to the hospital during an episode as I'd been told, then soon realised ECG done which confirmed AF then sent home so I stopped going as wasting everyone's time

Ppiman
Ppiman in reply to Jacky01

I think you’re right, Jacky. I’m lucky so far having had a successful ablation last year (fingers remain crossed). I hope that you are managing well enough in these darkened times.

I was told by my specialist that once the heart has been found to be generally in good overall shape, then the only thing to be done is to control the tachycardia, mostly with beta blockers (and, I gather, that they don’t really know how they work). I suppose the only point in going to hospital is to check the general fitness of the heart muscle, valves and blood supply.

Steve

Jacky01
Jacky01 in reply to Ppiman

Congratulations on ablation, even that can take two to three goes and not always a success. As for beta blockers, another mystery. I told my Dr that even in AF when dose due still went usual length of time before AF stopped whereas I had expected an hour or two before relief. His answer was " oh they don't work like that" ? ? ?

Ppiman
Ppiman in reply to Jacky01

All the fun of the fair, eh? My ablation was for flutter which, I was told, is more easily curable.

Steve

sandoval22
sandoval22 in reply to Ppiman

Reminds me of the several trips I had to A&E earlier this year and THEY couldn't work out if I had Afib or Atrial flutter because it was beating so fast.

If they can't work it out what chance have we got !

Ppiman
Ppiman in reply to sandoval22

With me, they injected, I think, atropine to stop my heart beating momentarily. This allowed them them to see the flutter on the ECG.

I hope I’ve seen the last of it all. Ectopic beats are the only trouble I have with my heart now, thankfully (so far as I know!).

Steve

Jacky01
Jacky01 in reply to Ppiman

Don't know what Ectopic heart beats are. With my first ever AF went to hospital in middle of night and was told I had panic attack! On release given medication (beta blockers) but never explained what they were for. Two years later back in A &E finally got real diagnosis

cuore
cuore in reply to sandoval22

Being able to correctly interpret an ECG , especially a more complex one, requires specialization that would not be in an A&E department. Whoever was treating you did not have that expertise.

sandoval22
sandoval22 in reply to cuore

Agreed. In 6 trips to A&E earlier this year not once did I see a Cardiologist and the hospital I am under, Hammersmith, doesn't have an A&E dept .

Singwell
Singwell in reply to Ppiman

Interesting. So a fault develops in the 'wiring'. I get that - it's how and why if that fault was previously not there...wear and tear?

Ppiman
Ppiman in reply to Singwell

I think that must be the case - or a genetic predisposition. It is amazing just how little is known about the workings of the heart, I have discovered. I gather no one really knows quite how beta blockers do their work.

Steve

Got to laugh or we wouldn't stop crying

Tickerprobs
Tickerprobs in reply to Jacky01

Hi Jacky...You’re right there mind. I have permanent variety (I think) and had a rough night last night. Ate late and had a couple or three whiskies. Woke up after I hour with rhythm and rate all over the place. Up every hour to the toilet and anxious. My problem is, I don’t seem to learn a lesson. I could be suffering from what is medically known as ‘being a divvy’.

Jacky01
Jacky01 in reply to Tickerprobs

Serves yer right

Tickerprobs
Tickerprobs in reply to Jacky01

Don’t suppose you’re known locally as Jacky the Samaritan ‼️❓

😂

Jacky01
Jacky01 in reply to Tickerprobs

That's a new one on me, called many things, is that a compliment?

Tickerprobs
Tickerprobs in reply to Jacky01

Well Jacky...With your ‘serves yer right’ comment, I thought, that’s not very empathetic but I obviously took it in fun. Us Northerners have got really thick skin, don’t you know.

Jacky01
Jacky01 in reply to Tickerprobs

Definitely said in fun.

Ask your Dr about testing for deficiencies of nutrients. Drs don't know anything about nutrition. And they for some reason don't take into account that we can be deficient in a vitamin or mineral. Our electrolytes could be off balance. I asked my cardio Dr to test for deficiencies and he looked at me like I was an alien. Finally got my primary to get me tested but it wasn't in depth enough. If we aren't getting enough of certain nutrients it can affect the heart. I don't understand why Drs won't test that. Doesn't make sense. I think most of us learned how important nutrients are to make our bodies function correctly in grade school. How sad that Drs just practice pills and procedures because that's what they're taught. They only treat symptoms and don't even look for a cause.

Jacky01
Jacky01 in reply to belindalore

Well 10 minutes Dr time only leaves them enough time to write a prescription these days

belindalore
belindalore in reply to Jacky01

Yes you are so right! I remember when I was young. The Dr actually looked at you. Now they stare at the computer screen looking up some magic pill to give us. Gee we could do that and just save them their lousy 10 minutes. 😒😡

Someone also was talking about the vagus nerve which runs through our bodies. I also read if it's inflamed or if the body is out of alignment it can affect6 Afib. Sometimes if I think my pulse is starting to act up I massage right under the ear lobe of my right ear. Under it and kind of below it. It will slow down the HR. The vagus nerve runs through there. Also massaging the bottom of the feet helps. I'm considering seeing a chiropractor. Just leery getting an adjustment at my age. 68 yr old female with some osteoporosis. But there might be other advice a chiropractor could offer. I used to get adjustments when I was younger and always felt better. Had a nerve in my stomach that would act up and cause pain. Told by my osteopath years ago It was a nerve. It could have been because of the vagus nerve. After an adjustment my stomach pain would go away.

Jacky01
Jacky01 in reply to belindalore

belindalore, the power of the mind is a wondrous thing. Dr once told me if you believe pills doing you good they will, if you don't then they won't. How true I don't know

belindalore
belindalore in reply to Jacky01

I know a couple of other like me who have strong faith in God. Both have Afib and both would also agree wirh you in some regards. Neither are doing very well. Yes the mind is a powerful thing. And I've used mind techniques to help with my anxiety. The mind doesn't change how we all metabolize these meds. That's a whole different ball game. I just happen to be one who does not metabolize pharmaceutical meds well. My sister is the same. Everyone is different in their make up. You may do well on your meds. Others don't. That is something else Drs don't take into consideration. They look at the drug trials and then put everyone in the same pot. And you just can't do that.

I know someone who's husband is a Dr. A surgeon. I would have thought because her husband is a Dr she would have no problems finding a good cardio Dr. Nope. She's now looking for a 3rd one. Why? They don't listen. And she's like me. Can't take the meds. She does seem to do better on the Eliquis. The beta blockers no. She, like me, couldn't tolerate those either. By the way my ex husband takes metoprolol and Eliquis and I have watched his health decline in the months he's been on these meds. He also has a strong Catholic faith.

Another thing. Drs don't tell us all the side effects of their drugs. Look up drugs.com and read about ALL the side effects of any drugs you're on. Pretty eye opening. And read some of the reviews there that people post. Not many there do so hot on the drugs. Some posts are heartbreaking.

Singwell
Singwell in reply to belindalore

Good advice. Following. Hope things are more now for Jacky

belindalore
belindalore in reply to Singwell

I wish we all could find Drs who would listen. It would make it easier to deal with this. I wish I could find a magic wand so none of us had to deal with it. But we all do the best we can for who we are and what we have and for those of us who believe in God, our faith. This forum is so much support for so many. Whether we all agree with one another doesn't matter. We are here for everyone. God bless us all.

Have you considered or been offered ablation? My PAF went from 1X a year to 4x a week over the course of 3 years. Most episodes were at night and 3-4 hours long. So I tolerated for as long as possible...after giving meds a try, I knew when I was ready for surgery, because all the risks and concerns I had were worth getting rid of Afib, even for a short while.

It’s been 10 mos Afib free, and wow do I appreciate the luxury of NSR again, rest of world doesn’t know how lucky they are, right?!?! I do get ectopics here and there to remind me that nothing’s ever perfect. So be it. Would do another one in a crazy irregular heartbeat if the time comes...you’ll know when you’re ready.

Jacky01
Jacky01 in reply to cpalmermn

Never been offered or discussed. I go 7-8 days then 24hr afib again. Have learnt to live with it and yes do envy people without it but during those 7-8 days live life normally except for tiredness mainly from beta blockers, just rest a while then carry on. Tired of chats with Dr which go nowhere so don't bother any more. Lots of people with other disabilities worse than mine which is my comforting thought

cuore
cuore in reply to Jacky01

Unless you want to, you should never have to live in AF. And, once you get AF, I would suggest your getting referred to an EP as fast as you can especially with your getting symptoms every 7-8 days. AF begets AF, the more you have the more you will get. It is not a matter of being offered; it is a matter of your asking for it if that is the route you want to go. I strongly suggest not getting stuck at the GP stage before your condition get worse because that is the course it is on.

I found Steve S. Ryan's blog helpful when I started my journey:

a-fib.com/steves-a-fib-blog/

Singwell
Singwell in reply to cuore

More goodies to read! You're so right about getting stuck at GP stage. My brother has had AF for 7 years. His Dr never offered him a cardiology appointment and patronised him when my brother suggested it. Now he's in permanent AF. He's not very assertive tis true but I was furious when he told me.

cuore
cuore in reply to Singwell

You're brother's story happens to too many patients for today with advanced AF knowledge. It happened to two of my friends, except they got stuck at the cardiology stage. Getting stuck at the GP stage is even worse because GPs are not licensed to prescribe rhythm control drugs.

So comforting to read this post as my AFIB returned this morning and I am waiting this out.

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