I have had PAF for over 2 years now. Episodes used to be few and far between but this year that changed -I am now getting episodes every 2weeks or so, despite moving to a much healthier diet, being a keen walker (I walk an average of 3 miles per day but longer when I can) and doing my best to keep stress levels down and sleep levels up.i am getting very concerned that I will go into persistent or permanent AF.
Is there anyone on here that has gone onto to have more frequent episodes without progressing to persistent or permanent?
Many thanks for your help
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Spangle14
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HiThere is no way of knowing how yours will progress. I have had it since 2012 without it becoming persistant. So try not to dwell on it - you sound as if your QoL ( quality of life) is good!
Well I have just had an ablation and it's a bit bumpy.
So my episodes latterly were every 2 days for about 3 hours. But after a while I stopped noticing them. It's for sure that when I was two years in like you I kept expecting an episode or to slide into persistant Afib and the worry sort of ruined my life a bit. But gradually I stopped bothering. As long as you are anti coagulated (are you on other meds?) then no worries. Cross the bridge of persistant Afib when and IF it comes. It isn't inevitable if your meds are working.
Thanks again, I do know what you mean, it can become all-consuming and take over our lives. I am not anticoagulated at the moment, which worries me, bit issues with bleeds have worried me too so I made a decision not to take them as some doctors thought that I was quite low risk. Nonetheless, it is still a risk and each episode brings the fear of stroke. This fear has been exacerbated by the increase in episodes. I take Bisoprolol as a PIP but I am awaiting a review with an EP so I can discuss meds and fears more. The longer I have to wait for an appointment, the more I worry that it isn't being controlled properly ☹
I have been taking anti coags for a while and certainly feel more protected. Do you have a cardiologist or Electrophysiologist ? They could really advise you on what to do next. As you are not really takings meds everyday your episodes might increase if they are not controlled. x
Hmmmm that's what worries me. I spoke with an EP last week who has suggested 50mg of Flecainide twice daily to start with. I'm hoping to have a face-to-face some time not to far off when I can discuss things further. What made you decide on an ablation?
I went from once a year to once a week, to once every second day and finally daily probably over a 6 month period. I was then put on daily flecanide, and AC and bisoporol. Made little or no difference at first with daily attacks lasting 2 hours or so. I am asymptomatic so I could cope physically but mentally I was all over the place fearing this was the start of the descent into permanent. Then after about 2 months or so I found my rhythm and although the attacks continued daily they were incredibly mild and short lived. I'm now getting them say once a week and often I will know the trigger (too heavy a meal or if I've had a beer). I'm sleeping well and exercising regularly. More importantly I feel calm and assured that if I get the feeling of irregularities, it won't last and the flecanide will take care of it. I am awaiting an ablation so all of this is temporary so that again may be helping me to stay calm. Your AFib is a million miles from permenant so try to relax and enjoy your life.
Sounds like good EP advice. I had over one episode per week, was started on 100mgs Flecainide per day, which did not stop it but 200mgs (a medium level dose) did and with supplements and many other lifestyle changes I have had nothing for over 8 years bar 2 very short 20 min episodes caused by known triggers. So don't worry so much but accept it is a steep anxiety curve initially until what works for you is discovered.
I have just been given Rx for 50 mg Flecanide 2x daily due to afib progressing from 3x in 5 yrs to 3x in the last 6 mos,,,I am not a candidate for ablation due to some excess weight per the EP ,,,I also take Eliquis and metoprolol,,,I am scared to death to add the Flecanide due to possible nasty side effects,,,I would like to wait as long as I can and enjoy the quality of life I still have,,so far,,my afib lasts 3-3.5 hrs each time and get out of it myself,,,my weight loss efforts are hampered by extreme spinal stenosis for which surgery is the only answer,,,so exercising is at a minimum with loss of feeling in legs and neuropathy ,,,just in a real pickle,,,I’ve lost 10 lbs and will continue even at a snail’s pace,,,wish I felt more confident about the Flecanide but seem to get side effects from most drugs and this one scares me,,,here’s hoping you do well with your choices!
I have been on flecanide for quite a few years now. 100mg twice a day with an extra as a PIP, I have never had any side effects. My AF is playing up a bit at the moment am under a lot of stress. But still wouldn’t be without the flecanide. I take Verapamil and a blood thinner but I am 72.
Well I thought I would try while my Afib was converting by itself . Usually an ablation is more effective if you have Lone Afib with no other pathologies. I have to admit that it's made things worse for the time being but there is a 3 month blanking period before I will know if I need another to touch up what was done. x
I have been told that I would be a good candidate for ablation but I'm just not sure at the moment, though with the current trajectory I'm on with this afib, it's becoming more of a consideration. Good luck with your outcome for yours Lilypocket, I do hope that it works well for you, once you are through this blanking period x
Sorry the frequency of your episodes is increasing. I'm surprised you're not on anticoagulants though at 68. Alas, being female and over 65 just gets us 2 extra points on the CHADvas score. So if episodes are increasing I'm wondering if the anticoagulation should be reviewed. Have you considered ablation as an option now that the AF is increasing its frequency? I'd guess the alternative is an adjustment of medication. Depends how much it interfers wuth your quality of life.
I was offered ACs but discussed with drs and decided to hold off because is some fears around bleeds, but I'm now getting more concerned because of the increase in frequency. I am giving an ablation some thought but want to try controlling with meds first, so I think I'll have to go down the flecainide route to see if that lessens the episodes. The EP I spoke to last week (by phone) said that he was going to instruct GP to prescribe flecainide but when I called the surgery yesterday, they couldn't find a record of that! There seems to be a breakdown between GP surgery and the hospital. I was meant to be referred to Barts and was told by them that I had been referred to general cardiology, rather than arrythmia and that I would have to contact GP to get re-referred. I did, only to be told by GP that Barts had made the mistake! Nightmare! Just going round in circles. Stress levels, don't ask!
I said exactly that to both GP and hospital. Barts has a very good reputation for cardiology, but I've had to give up with that one! Came to the conclusion that it's not that good if you can't get there in the first place!
I can only endorse what Lilypocket said: it isn't possible to predict the progression of AF, however it often progresses over time. I have been told this by several EPs. A switch of medication to Flecainide is the right thing to go and it is possible this wil address the problem.
I've had PAF since 2007. Over the 15 years (I'm now 67), the frequency and severity (length of time before going back to NSR and degree of irregularity) has varied a lot. I've had one mild dose of AF in the last 8 months but I have no doubt it will return at some time. But, we are all different as this forum shows.
It is so random and so different for everyone - an absolute conundrum! It sounds like your episodes are very few and far between, which mine were but no longer are. What meds/treatment have you had for yours?
Hey Spangle… Sorry to hear about your woes. I’ve had permanent/ constant Afib for eight years now and have been on Warfarin then Apixaban from the get go. I’m not sure that permanent AF is worse than PAF but I’m certainly no expert. I wouldn’t dream of trying to walk three miles but haven’t been athletic for a long long time. In recent days I’ve been feeling more unwell and feelings of impending doom, which I’ve experienced in my long and distant past. I certainly feel that I have a big connection to a psychosomatic element in my being, especially after this most recent episode. I can’t believe that I’m the same person I was a day or two back.
Mental attitude and positive thinking, I believe, is a major major part of our lives, although I’m not always capable of achieving it.
I have had PAF for 15 years. Episodes come and go but I've never gone more than three months without one. Usually flecanaide as a PIP sorted it but now I am finding that I have upped the flecanaide to 250mg as PIP with bisopropol (prescribed recently) taken first also as PIP. The episodes of Afib are lasting longer but I stay calm and try to get on with my life as best I can (I play golf which can be a problem) and at some time sinus rhythm will be restored. The longest I have gone in a-fib was 6 days and later I realised that had I kept up my water intake during that period sinus rhythm may have been restored sooner.
I have been hospitalised twice in Uk and twice in Tenerife where I go for 2 months in the winter.
I cycle, swim, play golf and canoe and am very active most of the time.
My main problems are food allergies and intolerences and acid reflux but also I know I must not overdo things as I am now 76.
I have been through all the anxiety stages and now I take the pills and try and get on with my life.
Depending on what medications you're on, sometimes a change to another type will do the trick. That worked for me, at least for a while, until I had my first ablation. As far as that, have you considered having one? Perhaps in the meantime it might be good to discuss with your doctor about taking an anticoagulant.
I've haf AF for about 27 years, now aged 77. For the last 6 years it's been permanent AF. My only medication now is an anticoagulant. Permanent doesn't worry me. While I don't walk as far as I once did, because I now have peroneal nerve damage in my right leg, unconnected with AF, 4 years ago I walked the 5 miles from Vaulx Hill military cemetery back to Bapaume, in northern France, causing no heart problems.
I had AF for 4 years, maybe 4 times a year lasting two hours exactly. Times were different then and my GP told me not to worry so I didn't! Then in 2010 I had a bad episode before my mastectomy - stress no doubt - and was given a proper diagnosis and Verapamil as a PIP - not Bisoprolol because my HR was low-ish at 50. Also a daily aspirin ( now longer recommended for AF).
The cardiologist seemed unconcerned so I went blithely on. The episodes didn't get more frequent, though they did feel more severe when I had them.
Then we moved house and wham! Persistent AF. I felt awful and spiralled into clinical anxiety. The drugs and 2 ablations have stopped the persistent AF and my QOL is good, although I get mild short episodes of 20 mins occasionally.
What has done me most good is dealing with the anxiety I saw a wonderful psychologist who let me talk through it and taught me how to control the catastrophising and over-thinking with techniques including self-hypnosis. (Like a kind of meditation but faster). Wish I'd done that years ago!
Don't worry about the anticoagulants like I did - a world class worrier that I was. I don't seem to get side affects from Apixaban or excessive bleeding. Although I wear a bracelet with a warning about it just in case. There are antidotes to the NOACs now btw, which there weren't till recently.
Thank you for your response Coco51I could do with seeing that psychologist - was that in the UK?
I really hope that I can get to see an EP soon but a recent referral got really messed up so am back to the drawing board with that one 🙄
I am trying not to be anxious and on edge when this dreaded thing will strike again. It is just so random and I have struggled to find any patterns or triggers - it has happened at different times of days and when I have been doing different things and there doesn't seem to be any thing in particular that I eat or drink that I can pin down as a trigger. A real conundrum for me! I changed my lifestyle pretty radically following my second episode - cut out alcohol completely, cut back on sugars and fats and upped my daily walking. That said, I don't think I was ever that unhealthy an eater but I did have a sweet tooth and know that I consumed too much sugar. I have never been overweight and do not have any of the comormidities that can trigger AF and I have been a keen walker for many years, so damn you AF!
I have suffered from another arrhythmia for many years so can only imagine that I have a propensity to any arrhythmia due to my dodgy heart electrics.
Would love to try the self-hypnosis if you have any more info that you can share. I'm getting to the stage where I would sell my soul to the devil!
Poor you. I sympathise. I have done all the same things as you and never really found much in the way of a pattern either, although stress and panic when attacks started made things worse. But I have to say the ablations and drugs have improved things enormously.
You are right about the propensity to arrhythmia. An EP I saw privately (a man much revered by many on this site) told me that my slow heart rate when not in AF is a sign my heart electrics are just dodgy! Arrhythmias are a sign of that.
I found the psychologist through a charity called Anxiety UK. I joined on their website and read through the descriptions of all the various therapies on there. I opted for psychotherapy and was emailed a list of people near me. I contacted 3 of them and Helen got back to me within a day. It was such a relief as I was so anxious I could barely leave the house. I had images in my mind of doom and disaster and collapsing in the street! Seems stupid now but there it was. It turned out her mother has AF too.
I had 8 sessions with her over 4 months and learnt to relax and address my fears. Hypnotherapy is not what most people think. It's about understanding the subconscious mind which was working overtime in my case . And the sessions are more like guided meditation. You get recordings of what she says. The sessions are now on my phone and at first I listened every day. Now just when things build up in me.
It certainly reduces the heart rate noticeably. I don't know where you are but I can PM her details if you like.
Meantime hope you get to see a good EP soon. Maybe revisit the one you saw before, or book a private appointment with the EP you have been referred to? It helps to feel you have some control and aren't just a number on a waiting list.
Thank you for your helpful comments and would definitely appreciate Helen's details.
I do generally have a slow resting HR, it usually sits at around 60 but can dip considerably lower when I'm sleeping. At the moment I'm watching England vs Germany so the HR is up!
I’d suggest anti coagulants as essential with any frequency of AF. I wasn’t on anything except pill in pocket (flecainide) and had 2 minor strokes after unconverted overnight PAF. Was very lucky but been on apixaban for last 5 years with no issues. I definitely don’t bleed any more easily. Dental work, cuts and bruises just as before.
Yes, I am aware and very scared of the risks gorpo59. Sorry to hear of your strokes and very pleased to hear they were minor. May I just ask if you have any other health issues, such as high BP, diabetes etc?
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