Symptomatic or not : Dear all I continue to... - AF Association

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Symptomatic or not

7164
7164

Dear all

I continue to learn about my paf and get confused.

Are we saying that some of you have paf and permanent af but get none of the horrible symptoms?

When I go into af I feel all of it the speeding heart, a fish leaping around in my chest , awful anxiety and peeing for the UK!

For those of you who have,are going through this is the ablation the most sensible path? I don’t like the bisop but can live with it. It’s the anxiety that is ‘doing my head in’ 😧

74 Replies
oldestnewest

There is an awful lot to learn about this condition but it seems to me that no two sufferers have exactly the same overall symptoms and reaction to them.

I have PAF and was very symptomatic and scared, worrying when I had episodes and worrying when I didn’t, in case I had another episode. My life was a mess until I saw an EP, was prescribed Flecainide and actually had AF-free time to consider how I needed to proceed.

Some people are symptomless - a friend was diagnosed ‘by accident’ after he broke his leg. No treatment necessary for him except anticoagulation.

Ablation or drug therapy is a choice which needs thorough research, thinking about and advice from a good EP. Either course of action is about quality of life and I opted out of ablation for the moment as drugs have kept my AF away for more than 5 years.

Best wishes with your choice - make sure to read and read as much as you can about the therapies available.

sotolol
sotolol
in reply to Finvola

Thank you your words have helped me more than you know.

Jo

wilsond
wilsond
in reply to sotolol

Echo everything Finvola said! Flecanide and biso stopped AF progressing for me...now after 2 years just take if I get an episode. Works quite quickly. One day maybe ablation required ,cross that bridge if need be , best wishes xx

sotolol
sotolol
in reply to wilsond

Good thinking.

Camelia23
Camelia23
in reply to Finvola

What is EP, please?

Cat04
Cat04
in reply to Camelia23

Electrophysiologist

Camelia23
Camelia23
in reply to Cat04

Thank you. Interesting that I went into my local health shop to ask about magnesium and the assistant talked about electrolytes.

BobD
BobDVolunteer

It is said that once you are permanent then the body gets used to what is going on and you become asymptomatic. In fact many people start asymptomatic which is why we are so keen on screening for AF. Far too many people only discover they have AF AFTER the stroke hits them.

As I have said before chosing the right time for ablation is up to the individual but I recommend that you do your research , investigate best centres within reach and above all understand that ablation is not a cure for AF but may hopefully remove or drastically reduce your symptoms. Recovery is not simple for many either so don't think you will be on "Strictly" any time soon afterwards and may actually feel much worse for a while. AF is a long journey and you have only taken the first few steps so chose your route carefully.

7164
7164
in reply to BobD

As always thank you

Coeurdelion
Coeurdelion
in reply to BobD

There is quite a body of opinion that the vagus nerve can cause afib. If ablation doesn't cure afib would it not be better to try to control activation of the nerve?

I know there are test programmes being run on electrical impulses.

BobD
BobDVolunteer
in reply to Coeurdelion

The vagus nerve has so many other functions that sorting out just one part of its use may be impossible. I have heard it called the second brain. Also not all AF is vagally mediated. I've been in this game long enough to remember when doctors rejected the idea of vagal AF!

Ladybird guide to AF:

PAF - Paroxysmal AF, which comes and goes, goes away by itself, and very often gives horrible symptoms which make you feel you might die though that is very unlikely.

Persistent AF - lasts for over a week and usually needs a cardioversion to restore sinus rhythm.

Permanent AF - lasts forever, can't be cardioverted to Sinus Rhythm, does not have the same scary symptoms as PAF or sometimes none at all.

I don't understand. If permanent af has no symptoms at all, how do they know they have it? Surely one can tell through the erratic or fast pulse?

Not many people feel their pulse unless they have reason to, so sometimes they only discover they are in AF when a doc checks them out for another reason. Others have PAF which progresses to permanent so they know about it but thankfully the symptoms don't seem so bad and their body gets used to them. I had AF for a few days recently and I didn't feel too bad to begin with so I guess that's a bit how permanent is. A holter monitor recorded frequent episodes of AF which I didn't notice once!

An ablation will not get rid of your anxiety - see BobD's excellent summing up. I would not have an ablation until you have learned some techniques to deal with the anxiety because you may feel even worse if you have an ablation and your heart wobbles a bit to begin with. I've had one ablation which has now failed but I can't be bothered to put my life on hold for however long, especially as I have cataracts and a worn-out hip competing for attention. I think it is different for a younger person.

My paf has rapid ventricular response, which is probably what makes it so symptomatic. I was first diagnosed about 5 yr ago, trying to work a busy nursing job. I didnt do well with the initial meds, was dizzy, tired and still having a fib. So after 4 mo I finally saw an EP who took me off the meds and gave me meds to only take when I have a fib. That worked well plus I made alot of life style changes, later retired and a fib got less and less. Now Im happy to say, I havent seen any a fib for about 20 months. I got an apple watch which helps me feel reassured that Im not having any sneaky a fib I dont feel. Ive avoided an ablation as things are quiet now. If my a fib was more bothersome, I probably would agree to an ablation

7164
7164
in reply to Hoski

Hoski

Thank you.

The Bisop is not stopping the Af and is giving me a tight chest on exertion. What are you taking instead please.

Rod

Hoski
Hoski
in reply to 7164

I am taking metoprolol 25 mg twice daily and Flecainide 50 mg twice daily. The betablocker meds ( metoprolol, biso, ) only slow our hearts down. The Flecainide is an antiarrhythmic drug, intended to keep the heart rate regular. I have primarily used flecainide only when I have a fib, on an as needed basis as my a fib isnt very often. Currently Im taking it twice daily as I just went thru two knee surgeries and was afraid the stress of the surgery would stir up the a fib. It didnt, so now my goal is to go back to the original plan.

7164
7164
in reply to Hoski

Hoski

Did you suggest the only when required for the meds?

Hoski
Hoski
in reply to 7164

It works for me. My EP suggested it although my cardiologist isnt a fan but cooperates. You have to have a clear knowledge if when your are in and out of a fib, monitor your own blood pressure and heart rate. Im a retired nurse so Im ok with that but people who are in a fib and arent aware of it, not a good plan

7164
7164
in reply to Hoski

Hoski

I am a podiatrists day trust me I know when it hits me!! Bad flushing, speed and irregular, I certainly know 😢

Rod

Hoski
Hoski
in reply to 7164

Yeah, me too. Like a tornado hits.

It is confusing. I had paroxysmal AF which became persistent, and I had bad symptoms like you, with both types. I felt my heart would burst through my chest when I went up hills. I have one friend who suffers the same, and two who never knew they had it. But then funnily enough the longer I had persistent AF, the more I got used to it.

The anxiety was awful and made it worse, but I found a therapist through Anxiety UK website. She also used hypnotherapy techniques and it was so helpful.

2 Ablations have worked fairly well for me and I am glad I had them, but I still need Flecainide. I am off Bisoprolol for the moment thank goodness because my heart when in sinus rhythm is very slow and I may need a pacemaker. The returning energy being off Bisoptolol has astonished me.

Good luck with your AF.

7164
7164
in reply to Coco51

Coco

Thank you.

My heart is slow with the bisop but I think it is supposed to be. I get chest tightness with it and struggle. The medics have never offered Flec ?

Rod

Coco51
Coco51
in reply to 7164

Rod,

You may not have been offered Flecainide, because you can only take it after having a stress test / perfusion study to check the heart's performance. I was told that you can't have it if the heart muscle is ischematic.

It immediately regulated my heartbeat and made my persistent AF seem less chaotic. I had some digestive problems with it at first but managed to overcome those. But my EP is very keen that you also take Bisoprolol with it because Flecainide can cause Atrial Flutter, and the Bisoprolol heads that off. Some other EPs don't insist, so that's confusing. But you could ask for the Flecainide and ask to reduce your Bisoprolol dose - some here say Nebivolol is better for them. Everyone reacts differently to the drugs and there's no harm in trying another type. I suspect price is an issue and docs prescribe the cheapest one first...

7164
7164
in reply to Coco51

Coco

Thank you

Rod

Maybe check your possibilities for an ablation while it is still is a possibility...... I was told that I had the permanent afib for so long it was no longer an option once it carves a channel...... not exactly what they said but something to that effect.

Also I recommend highly a formula called “Peaceful Spirit” at Jing Herbs... I have given it to many people as so many have anxiety these days and often take myself.

Jing Herbs is a great company and you can buy direct from them online or from Amazon.

Also the hypnotherapy recommended above and meditation using the breathe as an object could be very useful as the anxiety just makes it all more difficult for us and is something we can find tools to tackle.... still it is a challenging world so need to go easy on ourselves

I used to think of it as a frog leaping around inside my chest. I if you have a good EP with a lot of experience, have the ablation. I waited 20 years to finally have it done. Three and a half years have passed and I have a little flutter once in a while, but no locked in AF. If I need to do it again someday, I will.😊

7164
7164
in reply to Deadwoodmike

Deadwoodmike

Thank you

Any meds ?

Rod

For me it has changed my life, I was very symptomatic, could hardly walk as I was so weak, felt like my body was dragging through treacle, Bisoprolol made me feel awful too. I am now a year and a half since cryo ablation and doing great, feel like I have my life back so for me its ablation every time. All the best for the New Year.

7164
7164
in reply to absolutepatsy

Thank you

No meds ?

absolutepatsy
absolutepatsy
in reply to 7164

I still take Atenolol and Riveroxiban. I had an episode of AF when I came of the Atenolol after 9 months and the Cardiologist told me to go back on it. I think I should have been put forward for another ablation at that time but almost 2 years free of AF, I have just kept taking it. I also take Riveroxiban for anticoagulation. If I have any episodes of AF in future, I will ask for ablation.

7164
7164
in reply to absolutepatsy

Thank you for your help

Rod

Are we saying that some of you have paf and permanent af but get none of the horrible symptoms?

Well I have been in af since Dec.15th after four and a half years in sinus rhythm , I am in persistent AF with a pulse of 61 to 70 hardly even know I'm not in rhythm.

The biggest problem is this time of year everything is closed down till February so have to wait till then for another cardioversion.

My cardiologist is of the opinion that my symptoms do not require an ablation and he thought the risk / reward was marginal in that my QOL was unlikely to improve beyond were I am at the moment.

I would recommend seeing a hypnotherapist for anxiety as this condition in my opinion is ten times worse than afib.

7164
7164
in reply to sleeksheep

Thank you

Never considered hypno.

I think the anxiety is ruining my QOL.

Rod

sleeksheep
sleeksheep
in reply to 7164

I had two sessions to learn a calming mantra and have had 95% success and only wish I had done it decades ago .

Buffafly’s post explains clearly the difference between PAF, persistent and permanent AF. I have been told by two consultants that PAF is *not* necessarily less serious than persistent or permanent and that the “going into”’or “coming out of” PAF can be particularly dangerous. Furthermore, even if you are asymptomatic the condition can still be bad for the heart. Over time, with PAF, the heart remodels and the condition can become persistent or permanent. Anxiety is a well-known accompaniment to PAF and AF. Ablation doesn’t cure the condition but may prevent the heart from enlarging. I have a pre-ablation assessment at the end

of January and am certainly not looking forward to the procedure itself. However, ablation seems to be the only game in town for this condition, although you might be able to reduce its burden with

positive lifestyle choices. Progression from PAF to AF is more

likely likely with being overweight or even moderate drinking.

7164
7164
in reply to Samazeuilh

Thank you

I have lost 2 stone and have not taken alcohol for 18 months. The weight, stress and alcohol defo caused this to happen.

Rod

Samazeuilh
Samazeuilh
in reply to 7164

The other thing which was mentioned is blood pressure: this needs to be well-controlled; failure to control is also associated with progression from PAF to permanent.

7164
7164
in reply to Samazeuilh

My BP is usually very good 110/70 ish. The bisop sometimes takes it a fair bit lower and slows my HR to about 50 ish

Rod

Hi 7164

I had the leaping fish and the peeing but my heart rate was well controlled by meds and I eventually gave up the anxiety, so 50% of your symptoms. HOWEVER, I still described my Paroxysmal AF as "asymptomatic". Why ? Because I didn't experience dizziness, shortness of breath that others do. I could still walk around, climb stairs, make conversation etc. My understanding is that those with "symptomatic" AF are clobbered by each episode.

We are all different but for me, I tracked my AF burden (frequency x duration x severity) pretty closely for 3 years and when I found that it had increased significantly over a 6 month period I found an extra good EP and had the ablation. No episodes for the past 12 months.

During my 3 years of hesitation I dropped 8 kg of weight, increased my exercise regime from nothing to regular and spurned the demon drink. Now that I am "episode-free" as well as symptom-free, I am sticking hard to the good lifestyle regime, so that I might delay AF's reappearance for as long as possible, perhaps even forever :-)

All the best with your journey

This is the hope. In my case the frequency of PAF was about once a month and without much by way of symptoms. However, I was told that this is still too often. For the last 6 months or so, the frequency has reduced to about once every two months, but ablation, apparently, is still required; this is advised on the basis that the heart will eventually remodel and the problem is best addressed early. This, however, involves the possibility that after an ablation the situation will be worse, even if in the short term. I think if you don’t have any PAF you are better off avoiding ablation, although I should also think it’s important to monitor things like blood pressure, weight etc. regularly. EPs seem obsessed with offering ablations- I’m convinced that some would offer an ablation if you had an ingrowing toenail.

7164
7164
in reply to Samazeuilh

I’m a podiatrist 😊

I have never offered an ablation for an IGTN !!

Rod

7164
7164
in reply to creschendo

Thank you.

I am hesitating but I do get clobbered with each hit.

I am in northern Scotland how did you find a 'good' EP

Rod

7164
7164
in reply to creschendo

Thank you.

Can you choose your EP ?

I live in northern Scotland

Rod

7164
7164
in reply to creschendo

creschendo

Good to hear that you are symptom fee and long may it last.

Couple of questions. What meds were you taking?

How do you track down and check the EP ?

I take bisop 2.5mg but it still happens . I get a tight chest and I feel the ectopics and then I get anxiuos that the beast is coming. I have lost the weight and I no longer drink alcohol. I would like to get off the bisop and try to return to 'normal'

Rod

creschendo
creschendo
in reply to 7164

Hi Rod

Meds were

Flecainide for rhythm control

Diltiazem for hypertension and for rate control

Olmesarton for hypertension

Apixaban an for anticoagulation

I still take all these except the Flec and the Diltiazem is in a reduced dose - it’s just for hypertension now.

Regarding choosing your EP, I am in Australia where we have a hybrid public/private system so it wasn’t that hard. You would need a UK expert to guide you through the NHS but one factor that I believe is universal- the success of an ablation is heavily influenced by the skills and experience of the EP wielding the catheters.

I applaud the research you have undertaken with this post, everyone is different and the best person to become an expert on your variation of this horrible condition is you.

All the best

7164
7164
in reply to creschendo

creschendo

Thank you

Rod

I am confused. If you are episode free and symptom free, does this not mean you no longer have Afib? I find it difficult to understand.

Hi Couerdelion

My view is that I still have AF but it's controlled/in remission. I am very aware that it can come back.

Viewing my condition this way helps me to ensure that I manage my lifestyle choices in a manner that keeps me episode free for as long as possible.

The alternative might be to say "ablations fixed it, nothing to worry about" and sooner or later it will probably reappear.

I know it's a bit of semantics, but I think the general view is that there is no "cure" for AF, just control of symptoms.

I hope this makes sense

All the best

So one still has a fibrilating heart but can't feel it? Even through the pulse.

I had my first and only ablation 2 years ago and have been off all meds and AF free since. This may last forever, and it may not. Either way, it has been more than worth it to me-I have my life back and my anxiety is gone.

Each patient is different. Ablation results are largely dependent on the patients history, cardiac make up, genetics and the EP performing the surgery.

I can’t tell you what to choose. For me, I was willing to do anything to get rid of it. Thus far, I have been lucky.

7164
7164
in reply to Quilafizz

Quilafizz

Good for you may it last.

I want my QOL back

Rod

This is an excellent thread; very educational. I have had permanent AF for about 3 years and only had episodes before that so count myself as being lucky. Have a lot of sympathy for those if you with frequent/lengthy episodes. Im able to do most things but do get breathless. Loss of weight, no alcohol, exercise help this. Have had a cryo and radio frequency ablation; the latter lasting a month before I did have an episode. I wonder whether a PIP might have helped return me to SR. Meeting with EP in January to agree next steps. Hopefully, I can have another ablation as I feel so much better when in SR and don’t think drugs offer a solution for me. I did find post ablation that I was constantly check heart rate so even when all was well I was anxious about returning to NSR. Maybe worth discussing your anxieties with your GP. Best wishes in making your treatment choice.

7164
7164
in reply to Johnboy64

Johnboy

Thank you and good luck.

Rod

HiddenThis reply has been deleted
cpalmermn
cpalmermn
in reply to Hidden

I would hardly quantify an ablation as just a simple day and a half of time...had mine 2 weeks ago, have been back to ER twice since, first with incredibly painful pericarditis, and just two days ago after 20 hours of atrial flutter that had to be cardioverted. Never had A-flutter before this ablation.

Ablation is just one educated guess at how to address this condition. Most of the time, it helps, but they can never promise exactly what your outcome will be. Many times, it also needs to be repeated.

7164
7164
in reply to cpalmermn

Feel for you !!

You were poistive to go ahead with it. I truly hope it is going to be worth it for you

Rod

HiddenThis reply has been deleted
nettecologne
nettecologne
in reply to Hidden

Mike, I have done my own private survey of ablations on this forum and success rate. And believe me, it was nothing like the numbers they tell you in the clinic where they want to do the ablation. One should never forget, that medicine is also a business and people live on its gains. It is somewhat like selling Tupper, if you want so sell, you would NEVER tell people that some lids tend to get sticky after a few years;)

And even studies (some of them) tell you much lower numbers, had one yesterday which said 20 to 50% success.

7164
7164
in reply to Hidden

Don

Wow are you positive .

What were your symptoms in AF and what meds were you on to try to control ?

Pleased for you

Rod

7164
7164
in reply to Hidden

Don

Sorry sent your reply to cpalmer in error

I have found that having this condition has given me anxiety. I have never had anxiety before and think it has most definitely caused it. But I would think it would, one minute we’re calm just pottering around and then our hearts are pounding, sweating and lightheaded this causes us to go into fight/flight mode, Adrenalin kicks in and then of course the Anxiety. It a vicious cycle.

I’m doing lots of yoga, meditation, eating well and trying to reduce stress - all in all this has helped massively. Be kind to yourself, hope it settles down soon, Lauren ☺️

7164
7164
in reply to Lahodges10

Lauren

thank you

so true !!

Rod

I was diagnosed with aFib in September 2016. I have yet to experience any symptoms save once when I was doing hard physical work and I got short of breath. The cardiologist was nonplussed when I didn't evince any symptoms during a Stress Test and my echo cardiogram was normal. So he's called it Atrial Flutter as a euphemism. I tried an anti-coagulant (warfarin) but had dreadful side effects that caused gastrointestinal distress and a clot to leak from my right eye (that was chronic from an injury thirty-six years before. That was a can of snakes! I needed an eye operation to clean out the "junk" to restore my sight and the procedure encourages cataracts to form (Yes, I have that too.). In some respects I am an outlier, so don't go by my experience with anti-coagulants. I have two very small localized hemorrhages in the left eye and I don't want to reopen Pandora's box in a NOAC or a DOAC. Good luck.

HiddenThis reply has been deleted
nettecologne
nettecologne
in reply to Hidden

Means you have to pee every 15 minutes or so for the first few hours of AF. I have it too. I think it only happens when your heart rate goes really up, the people with normal rate AF (like in the 70's) do not have this symptom. I am always parched after an episode.

Interesting. I thought that was quite normal. A doctor once told me that by the amount of urination they can tell that people really have trouble with their hearts. So it seems this too is not to be generalised.

I had ablation for AF and no success, instead new additional problems with heart caused by ablation. That can happen too.

I also had one for WPW-syndrome, which was successful, but that is much easier to ablate than AF.

Have PAF now over two times a week and always about 24 hrs. Just too much.

I have paf and urinate heavily when I get an attack. I can lose 2 kilos in weight during 1 attack circa 8 hours. 2 kilos = 2 litres of liquid I believe.

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nettecologne
nettecologne
in reply to Hidden

jamanetwork.com/journals/ja...

Since the introduction of catheter ablation as a viable treatment option for AF more than a decade ago, reported long-term procedural success in suppressing AF has ranged between 20% and 50%.14 Although both procedure time and safety have improved substantially, the success rate has not seen a concomitant meaningful improvement despite significant advancement in the technology used in the ablation procedure.28 Another major challenge facing the AF ablation approach is the need for repeat ablations,14,29 with some patients requiring up to 4 interventional procedures to achieve suppression of recurrent arrhythmias.30 In a prospective, randomized, multicenter study comparing ablation with antiarrhythmic drug therapy, it was demonstrated that 66% of patients had better health outcomes due to ablative treatment of paroxysmal AF after 9 months of follow-up.31 Most of the published ablation studies, similar to this one, are short-term (≤1 year) follow-up reports.32,33 Longer follow-up suggests a lower success rate.34,35

7164
7164
in reply to nettecologne

Really feel for you !

I would struggle/

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