I had an episode of PAF about ten days ago. Ongoing symptoms of more frequent ectopics and "heavy" heartbeats (palpitations) seemed to be settling down over the last two or three days. I woke at about 0620 this morning-I had been dreaming pleasantly-and remember thinking that the heart felt really comfortable. I turned over and, for some reason, decided to feel my pulse. To my surprise, I was in AF, only slow AF (68bpm on the Kardia) but AF nonetheless . This is the first time I have had two episodes in such close proximity since being given a higher dose of Sotalol at the beginning of 2019-usually the episodes are at least two months apart with, recently, an interval of over 7 months. The concern now is that I am moving towards permanent/persistent AF and can expect to get more frequent episodes. If anyone who has gone from occasional PAF to persistent/permanent AF could describe how it progresses, i.e. whether the episodes become more frequent and/or longer, more intense etc. and also how long the process took, it would be very useful. A very miserable morning!
In AF again! Moving to persistent/per... - Atrial Fibrillati...
In AF again! Moving to persistent/permanent AF?
I progressed from paroxysmal to permanent AF within about 6-8 wks. My AF is more silent and I do not feel heavy heart beats.
Would encourage you to ask you medical professional to let you wear a heart monitor for an extended period. Heart monitors provide a true evaluation of you heart rate. My AF was diagnosed in this manner.
Also, it would be good to be on an anticoagulant for stroke prevention.
Please tell me about sotalol. Has it been successful for you ? My doctor recently offered it to me but as I read it needs to be taken under supervision as it may cause very abnormal heart rates.
Thanks for your reply. I'm going to ask for another heart monitor, but there is usually a long waiting list, so I suspect that it will not be any time soon. After endlessly postponing the decision I finally took 5mg of Apixaban today at midday. The side effects listed on the accompanying leaflet were alarming.
Regarding Sotalol, I've taken it for about 3 years. So far as I know it hasn't caused any very abnormal heart rates. It does slow the heart down. My heart rate at rest is in the fifties which I have been told is ok. A cardiologist told me that although in some rare cases it can prolong the QT interval, this doesn't apply on the lower doses. They would probably start you on a low dose to see how you get on with it, then increase as necessary, so you might need to be patient. I wasn't supervised when I started it and I don't think this is usual. It has a different mechanism to flecainide. After taking it, I find that the heart rate will usually slow down within 30 mins to 1 hour. I haven't had any unpleasant side effects from it. It will make you quite drowsy if you take a dose before bed, and it promotes more vivid dreams (a listed side effect). If it has been suggested to you I would give it a go. I'm actually much less worried about taking it than the Apixaban. It's been successful in the sense that for much of the time I haven't had AF too often -my longest time without AF has been 7.5 months. But, of course, no AF drug is perfect- I may or may not be about to enter a new phase of AF, hence my question.
Finally, I wondered if your persistent AF came about following increasingly *frequent* episodes of PAF, or the episodes just became longer and longer (or both)?
My paraxysmal AF became permanent over a period of about a year. Each AF attack just lasted longer for a while and then became more and more frequent but less violently alarming. Prior to this I had very symptomatic AF, and medication to resolve the rate and rythymn problems I experienced eventually resulted in me having a pacemaker fitted. As my AF progressed to persistent/permanent my symptoms became far less uncomfortable and dramatic and in fact these days, although I am aware of the arrythmia in the background, life is much more tolerable. I have been on Apixaban since first being diagnosed with AF and would much rather take my 5mg twice a day than have a stroke! I believe the leaflets listing side effects that accompany drugs, attempt to list everything ever reported, however rare. As someone who has a list of allergies that would fill one of those leaflets, I also believe I'll never know if it will harm me until I take it, but sometimes, as in the case of anticoagulants or covid vaccines, the risks of not taking the preventative measure could be much greater. I hope your mornings get less miserable!
Appreciate the very informative info on sotalol. I am 75 so that may be the reason to give under supervision.
I also take 5mg of Apixban twice daily with no ill effects. As AF79 states, anticoagulants are highly recommended for stroke prevention.
My heart has been monitored since fainting episodes in 2010 and 2019. Annual cardiologist visits with regular EKGs and echocardiograms every 2 years. No problems indicated until an abnormal EKG in Jan '21. Wore a heart monitor for 2 weeks which indicated I was in AF for 8 hours straight. Did another heart monitor in March and I had developed into persistent AF. No symptoms, heart rate in 50's. Persistent AF is controlled with metoprolol with average heart rate in low 80's.
Only prior symptoms past 2 years were a heart rate over 110 which would occur only about twice a year and last for 24 hours average. Prior to developing persistent AF, I had a very good exercise program, walk/jog 3 miles a day and circuit strength training. Due to family history of heart disease, knew I was a candidate perhaps for a valve/vessel failure, but never dreamed I would have a heart rate issue due to my exercise regimen.
Previously, I never knew I was in AF because of no symptoms. When my heart rate excelled twice a year I only knew because I take my heart rate and blood pressure regularly. Chances are I had AF for a long time but it was not detected. Looking back, it was likely the reason for my fainting episodes though tests afterward were normal.
Certainly no expert, but if your heart rate is in the 50/60's and you are experiencing no other symptoms, sounds like your AF is well controlled. Would not be that concerned about going to persistent AF unless symptoms develop.
But that is where those heart monitors worn 24/7 for an extended period provide such a valuable service. It can determine the true extent of AF which is sometimes silent.
Good Luck in the future.
I think you only have to be monitored when you first take Sotalol. I was in hospital when they decided to swap Atenolol for Sotalol. I had to have a low dose of 40mg twice a day, but I’ve had no problems on it and have been on it for quite a few years now. They have just increased it by 20mg in the mornings, a couple of weeks ago and I’m ok. It’s always worrying when they give you new medication. I was scared to take anti- coagulants, unnecessarily. They are no problem either, touch wood.!!
Thanks for the info !
So sotalol does a good job of controlling your AF and heart rate ?
I was given it for SVT quite a long time ago,I’ve had that for many years. I developed AF in 2014, after a virus infection. It helped my SVT, although I still get it from time to time. I have now had 4 episodes of AF. So I suppose it must help. Hope it helps you.
I wonder if you would benefit from a low dose of Sertraline. It is a very effective anxiolytic and the safest SSRI in cardiac disease.I took Sertraline and Sotalol together for 4 years before PVI, without any obvious interaction.
I still take Sertraline 8 years later. Takes all the stress out of my life, so much simpler than non pharmaceutical approaches.
Hi I've been in PAF for 4 years now with mild symptoms and episodes about once every 6 weeks I take an anticoagulant but cant tolerate Bisoprolol as my heart rate is usually mid 50's and the drug makes me extremely tired so I usually take only 1.25 mg at the onset of an episode which is enough to slow the rate of AF and helps ,so I'm told ,to revert to NSR .
My EP has suggested a second ablation and I'm on the NHS list but he did say its not always the case that PAF progresses to permanent .I'm usually only in AF for around 12 hours with one episode in 4 years lasting longer than 24 hours .
I do find that not stressing out about being in AF and trying to carry on as normal whilst taking it a little easier works for me
Recently I've learnt that diet and digestion has an effect on my episodes starting, especially ectopics , so I have adjusted meal sizes and cut down on sugar and spice .
Thanks. This is a really useful and positive reply.
Went into permanent AF after one very stressful incident caused my cardioversion to fail. Its not that bad as your body grows to get used to any symptoms you have and they feel less and less bothersome. I still work in telecoms travelling around the country and apart from tiredness occasionally its fine I dont miss the on off and feeling terrible episodes at all.
Thank you for this question; You asked what was on my mind
And on my mind too. Thank you for asking the question.
I am on Sotalol too. 3 x a day 40mg and it suits me much better than bisoprolol , metaprolol and flecanide did.
300mg of Flecainide for 10 years reduced AF episodes to one or two short episodes a year. Then at some stage between annual consultant appointments I went into persistent now permanent AF. I didn't have any machinery to monitor my heart. I have no idea when my paroxysmal became persistent.I first had a bout of paroxysmal AF 9 years before I was diagnosed with paroxysmal AF. The GP told me not to worry if I had a bout once or twice a year. 9 years later my bouts had increased in number, some weeks there were none, other weeks 10-12, other weeks 3 or 4. I was told to go to A&E next time I had a bout. From there 10 months of amiodarone which had little positive effect, then put on 50x2 Flecainide which during the next 2 years was raised to 150x2 a day. No beta blocker prescribed,. Once I had become persistent Flecainide was stopped. I only take an AntiCoagulant now. Warfarin is my choice.
Sam, Looking at everyone's responses, I'm reminded of the common reply here of how different all of us are with their individual AF experiences. Anyway, here's my story of progression. I looked back at a personal log I kept of my AF episodes. I started that record in 2018 about two years after my infrequent episodes started in 2016. In the first three years I kept track, I had 18 episodes, spaced sporadically, so averaging about 1 episode every two months (I had one stretch of 5 months with no events). Then, at the beginning of this year (2021), it all started coming at me--the progression of the condition. 13 episodes in the first three months of the year. Once a week more or less. Given that the PIP meds gave me a 2-3 day med hangover, I was either in AF or hungover from the meds nearly continuously. I had been putting off the ablation procedure that had been recommended several years ago because I felt as if I could overcome (and didn't want to have my heart tissues burned). I finally went for the ablation in May this year. Fine since. Wish now that I would have done it sooner and saved myself all the anxiety and med poisoning. Hoping for the best for you and your journey.
Thanks for your reply. Like you, I was offered an ablation when first diagnosed in 2018, but since lockdown in early 2020 my episodes became less frequent. I attributed this to retiring, improving my diet, losing a few kilos (I'm more or less normal weight) and drinking almost no alcohol. I had episodes 6 or 7 months apart and felt quite positive about this; previously they'd been 1-2 months apart. However, I've had more ectopics and palpitations over the last month and two episodes of AF 10 days apart. These were about the usual duration and didn't involve a fast heartbeat. I've had quite a bit of stress recently, but then I had stress before without the AF. So I think at the moment it's simply unknown if I am experiencing progression or not. Because of the Covid crisis I missed an echocardiogram. The last one was in 2020 and was pretty good. I'm just going to have to wait to see how things play out. It's encouraging to know that your ablation was successful. I've been told that you have to be symptomatic to be offered one. I'm aware that my symptoms are-for the moment- at the milder end of the scale, but I just can't stand AF and it's ability to pull nasty surprises when you least expect them.
Looking back I probably started with episodes of abnormal heart rhythm back in the late 1990s. But then it was infrequent episodes that lasted 1 hour and occurred every 2 or 3 months. Fast forward to 2015 and episodes were getting more frequent and longer. Kardia mobile confirmed AF . After taking Biso and Flecainide for over 2.5 years ( which did me no good at all) I was offered an ablation in late 2018. My EP welcomed my log of AF episodes spanning 2 years. Now I take Rivoraxaban as an insurance. Good luck going forward.
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