Persistent afib: This forum pops up in my... - AF Association

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Persistent afib

Vince66
Vince66

This forum pops up in my email from time to time. I read about al the people’s problems . What gets me most of all is all you people going on about afib and how much it affects you. I have persistent AF and was diagnosed at 38 years of age I am now 52. I don’t feel any different. I live a normal life. My blood pressure is always good. My heart rate is always good too although it is not regular. With all the problems I am reading about I am beginning to think there is something wrong with me. Or are you all dwelling on your problems instead of getting on with life. It’s not a killer you know. I don’t know if you all get together Fromm time to time but I would like to meet people with this condition. I feel I’m on my own with this. I have been discharged by my consultant and my doctor doesn’t seem to want to know. Saying that I do feel fine. FYI I take 5 mugs of Bisoprolol daily and po dada anti coagulant.

21 Replies
BobD
BobDVolunteer

Since you have never had paroxysmal AF you rather luckily do not understand what most people go through. I know that those who are constantly in AF do not experience the violent swings which come with it and how the body accepts the new reality so just thank your lucky stars you are not one of the paroxysmal group. I recall one of our number who on mentioning to a leading EP that he was in persistent AF had the reply. " Lucky Bugger!"

Hi Bob so what is parxysimol AF how does it affect people I am interested to know. I used to get symptoms of racing heart beat and palpitations on a regular basis but over the years things have settled down. What is in the back of my mind is the long term effects of what I have.

BobD
BobDVolunteer in reply to Vince66

PAROXYSMAL AF comes and goes usually when it feels like it and and can vary from a feeling of mild palpitations to one of total collapse with a heart rate of well above 200 as described by others. My own personal record was 225 but I know of others much higher. Once the body accepts the AF and it becomes permanent or persistent then the extremes of feeling tend to fade away. In fact many people here in UK (probably 1/4 million) have undiagnosed AF , know nothing of it and are therefor at very high risk of stroke. Many only discover that they have AF after the stroke renders them seriously ill. AF related strokes account for 80% of the most serious and un-recoverable strokes which is why proper treatment and anticoagulation is so important with this condition. You are also incredibly lucky if 5mg Bisoprolol does not render you zombie like as this is not uncommon on even half that dose.

Also as John touches on in his post ignoring it and trying to push through it has caused a few deaths in such things as marathon running, triathlon and iron man events so it is important to listen to your body and act accordingly.

Hi Vince and welcome to our forum.

There are many varying types of AF, some can be almost ignored while others are totally debilitating.

Being one of those who had the debilitating type I can assure you it's awful and at times completely disabling. When it struck, at times I could barely walk from one room of my house to another and it would leave me exhausted for days after the attack ended. I spent quite a bit of time in hospital too with a high heart rate. I once had to struggle to stay conscious, while sweat poured off me while I called for help. Trust me it's not nice and some have it worse than I did!

I can appreciate that it's something difficult to understand if you have never experienced AF that way.

Jean

Paroxysmal afib like mine comes out of the blue,and drops me sometimes.Feel shaky,sweat,pee for Britain,heart jumps and lurches about,dizzy as hell,lasts for hiurs sometimes,no let up even though i can use one of my meds as extra in an emergency,not as effective if ive eaten in the last hour or so.Attacks cannot be predicted,so i am anxious about driving more than a taxi ride home in case.I wouldnt want to drive in AF attack due to dizziness and feeling like rubbish.

Some people get no symptoms,they are the most at risk group if AF is not diagnosed,as they are not protected against stroke through ACs.

Hi Vince, "It’s not a killer you know."

Back a few months ago we had a very lively chat/debate on this very forum re the above. At times it was very controversial to say the least, with numerous members having the same train of thought as yourself.

Whilst I agree that people can and do live long lives with Afib, the discussion (I believe) gained some merit by agreeing that it (can kill you) if you do not have the correct (I emphasise) "correct" treatment, along with taking care of yourself. Re "taking care of yourself", just because you might have run marathons all of your life etc - does not mean that you can carry on doing so. Unfortunately, the "correct" treatment, (because we are all different, with differing forms of Afib), is very much a bit of a lottery, thankfully a lottery with a bit of forgiveness, so if you find the "correct" treatment, you will last as long as the next person.

To give you an example of ignorance (me).

49 years ago I was diagnosed with palpitations although they could never get a recording of it. The consequence of it, ( I was quite young), was that I carried on (just like yourself). I used to do light running and light swimming. Unfortunately, I got lost in the belief that although my heart raced on for hours afterwards, ( it would take ages to return to a normal pulse), that I was basically unfit and that I would soon have a fitness level of others - I never did, with it many years later moving on to Afib. With hindsight I have been very lucky.

My point being - do not be blasé/dismissive re what you have Or it will more than just bite your bottom!

Life for you will go on, if you do not ignore warning signs.

Whilst it is not ideal to be in permanent AF it is a fact that if the condition is persistent you can get used to it.

I have suffered PAF for over 26 years. I am very symptomatic, I never know when it will start but it always takes me by surprise. When I am in AF I feel awful, lethargic, nauseous and breathless amongst other unpleasant side effects.

If I take PIP the aftermath of the overdose makes me feel awful for up to 2 days.

I agree with you that AF will not directly lead to my death. However mentally I lose the will to work and mentally life becomes totally pointless during these episodes.

The next thing mentally is that I never know how long it will last each time and that feeling leads to mind games. Will it last an hour, a day, 2 days or longer?

If longer will I need a cardioversion?.

If so how long will I stay in hospital?

Will the cardioversion be successful?

In my case I have allergic reactions to the adhesive used to attach the electrodes. Normally the reaction causes excruciating Urticaria lasts about 10 days. I itch from head to toe with only ice cold showers every hour or so giving me respite. The Urticaria is worse than having AF.

This is why whilst under the care of 4 different EPs over the past 11 years they have deemed it worthwhile performing 7 ablations on me. Experiencing those procedures was also not a bundle of laughs either I can assure you.

So in summary, we are not a bunch of winging hypochondriacs. AF can be absolute torture for many.

It is also a static that over 800,000 in the UK suffer AF and it is believed that maybe as many more also have AF and don’t even know they have the condition.

I hope you now understand.

Pete

Hi Vince, there are far more people 'getting on with their lives' than visiting this site, however those here are looking for information or reassurance. We are all different and have different symptoms and some people panic when they are diagnosed. However some, like you, just feel they would like the company of others with the same condition, or suspect they are being a bit neglected because they are not making a fuss

I see you do have a concern about the long term effects and I suggest you read info available on the AFA site or the British Heart Foundation. It's good you feel fine but the moment you don't you should make a fuss, and do remind your GP that once you reach 65 you should be on an anticoagulant, maybe before if you have high BP or other health issues. There are groups that meet up, depends where you live, best to ask in a separate post.

Hope that helps.

Having read some of the replies to your post Vince, I’m sure you know have a better understanding of how AF can influence and affect the lives of fellow sufferers in wildly varying degrees. You mentioned meeting up with fellow AFers and there are some supporters groups around the UK details of which can be found in the patient information section of the AF Association webpages. Also, there are a number of social gatherings organised throughout the year but you would need to monitor the forum to pick up on details. I belong to a group that meets regular at Epsom Hospital so opportunities are out there. Lots of good suggestions have now come your way which hopefully you will find helpful.....all the best.

Hi Vince66

Can you remember why you were started on anticoagulants at a relatively young age? Do you have other problems which came in to consideration and perhaps should be reviewed by your GP from time to time?

Just to add a slightly different tale to those above, paroxysmal AF episodes struck me without warning. I almost collapsed totally with heart rate well over 200, weak, clammy, chest tightness, peeing for England and often vomiting (not helpful if trying to take medication to quell the attack!). If it happened while out I was completely unable to get home, or anywhere else, under my own steam. I knew it wouldn’t kill me, unless I happened to fall in front of a bus! But it was still very scarey. And just 2.5 bisoprolol taken daily to try to keep my HR down in the event of an episode left me constantly ‘walking through treacle’ with the result that I stumbled and fell several times. Luckily I didn’t break anything more serious than my thumb. Thankfully an ablation almost two years ago has given me my life back and the advice and support from this group has kept me sane (almost). I hope this helps you understand and would encourage you to meet up with others as has been suggested.

Hi Vince - I would echo other posts you have already had.

Just wanted to add a reply to your last comments and questions - yes we get together in some regions and usually will announce a get together on here,

It is very much up to us as individuals to arrange something so for instance here in Devon, Jeanneanie & Bob arranged a late breakfast meeting. The meetings are normally informal and very friendly.

There is also an annual Patient Day held in Birmingham, normally October so unfortunately you have just missed that one but the subjects and slides of what was discussed will be made public for a fee - go to the AFA site or watch for the announcement that they will be available.

I think the main reason for this forum existing and continuing is to befriend others who feel they, like you, are on their own with this condition because any treatment is only for symptom control and if you can, like my husband, continue without too much incapacity then great - unlike some of my episodes because I go in and out of AF - I can get very ill and have had a few blue light rides along the way.

Best wishes CD.

Some pretty good answers already to this query from Vince. I would only add that it hits everyone slightly differently from what I've read on here, and that how you react when it does strike seems to be a major influence on it's effect.

The first time for me was the worst, and I did manage to keep going (and drive - I had a duty to others on the occasion). But later, as I became more and more anxious, the effects became more devastating until I could barely get up to bed. As I lay wondering what was happening, I started to think I was about to die, and sent for help. The paramedics told me I reached 280 bpm. It's never been that bad since. I now know what it is and take the appropriate action, and am less anxious.

Persistent or permanent AF must be a very different experience.

Fair play i am in persitant af to caused by hocm it enlarged my left atrium ,i had a septal myectomy and billateral ablation at the same time, failed also the myetomy left me with lbbb , but like you i am on 5mg bioprolol and pradaxa feel okish can walk ok but when i ask for abit extra it all tightens up as to say thats enough good luck to all.

Hi Vince66,

Your story is important to give some balance to the views published on this site. Literally thousands of people have AF and are not even aware of it, some have vague nonspefific symptoms like fatigue which can be relieved by adjusting their meds carefully. It does not even depend on whether the AF comes and goes – I quite often undertake electrical cardioversion which is successful but the patient says there is no difference.

The important fact is that everyone is different and you should understand that most people joining a forum like this are those that are most badly affected by the AF and have had difficulty in finding a solution. But for someone stumbling onto the discussions here it can give a misleading impression that it is usually a terribly debilitating condition – which can be quite depressing especially if you have recently been diagnosed with AF. Actually, many cases can be prevented altogether by dealing with the cause: hypertension → treated, alcohol → stopped, thyroid disease → managed, heart failure → controlled, bradycardia (very slow heart rate) → prevented by a pacemaker, obesity → corrected, etc. The majority of the others can live a normal life with just mild medication (diltiazem, digoxin, beta blocker) to contril the rate especially in the first few years when it tends to be too fast, and anticoagulants where indicated to prevent strokes.

But for those who do have symptoms they can be VERY debilitating and frightening, and uncontrolled rapid AF over a period of time can lead to heart failure – so it is NOT always a harmless condition. Fortunately this forum is here to help people in this end of the spectrum to get support and help with finding successful treatment, which can be a difficult, lengthy and frustrating process.

Hi Vince,

Thanks for a most interesting post.

When I joined this forum I had "suffered" from Paramoxial AFib for about 20 years. It virtually ruined my life, as I lurched from episode to episode, sometimes with long intervals, sometimes just a few days. It wasn't just the Afib, more the stress of waiting for it to start. Once it started I had all the symptoms that others have described. Never got used to it, but very happy when each episode finally stopped, then just waited in fear for it to start again, and the circle started all over again .

Only relief I got was from taking tranquilizers ( Lorazepam), which turned out to be great help for my nerves, but also turned out to be highly addictive.

Anyway I finally went into permanent/persistent Afib about 2 years ago, and whilst unpleasant at the time, I have been "lucky" in that I hardly even notice it these days, except for occasional ectopic "runs" My BP is normal, HR mostly 70-90 and my stress levels are much better. In other words, despite having an irregular heartbeat I, like you, feel completely "normal". I can eat and drink anything I want to, in fact do anything I want to do, without the fear of "triggering" another AFib attack...What a relief!!!!!

So now, I begin to wonder what I stressed about for so many years, I take Apixaban every day to reduce my risk of stroke, bit otherwise I just enjoy life best I can.

Dave M

pottypete1
pottypete1 in reply to concup66

Hello Dave

You describe the comparison between coping with PAF and permanent AF.

I have experienced both phenomenon.

I have suffered from PAF for many many years and the stress it causes each time it rears it’s ugly head is real and tangible.

Last year my heart switched from PAF to Atrial Tachycardia after an ablation in March. The result was that I had a heart rate of over 120bpm for 3 months until I had another ablation that not only stopped the Tachycardia but also reduced my incidence of AF from regular to rare.

During that 3 months I grew to accept the situation even though I had a very high resting heart rate.

These days AF is a rare occurrence. However this morning at 05:00 GMT I woke and despite rising very slowly I realised I was in AF.

All the bad feelings and side effects were back. I took Flecainide as PIP and now 3 hours later I am back in NSR.

Medically permanent AF cannot be as good for you as NSR but the evidence seems to be quite clear that it is easier to cope with permanent AF rather than PAF.

Pete

Hey Vince, I'm like you and I don't notice any symptoms. I used to wonder why but realized it is because I am in permanent afib. At first I was so worried as I learned I am not a good candidate for an ablation but now I just go on with my life and don't feel any different. So I'm in California -- where should we meet up to commiserate? :-)

Im in persistent afib as well but do jot have the results you ate having. I have a scheduled visit with my dr. In november could we chat. Rickw0923@gmail.com

mbheart
mbheart in reply to Rickw0923

Ricksw0923 - not sure who your message is addressed to - please clarify.

What a good comment I am of the same attitude permanent Afib for over 4years just reduced my bisoprolol still take digoxin and rivaroxaban lot of worst conditions out there than this

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