AF Association
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Question for those in permanent af

Can you tell me what is your heart bpm is when you are permanently in Afib please?. I have often wondered if my heart went into permanent af how it would stand up to the 140/145 beats per minute I have when I have an episode. I find the thought of permanently being in af quite frightening. At the moment I only get episodes every couple of months, but they are getting longer in length each time they happen, the latest was 27 hours long.

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Hi Gmc54

I’m 70 and in permanent AF/Atrial flutter. My rate is typically 60-70 at rest rising to 100 on exertion. I ran up 6 flights of stairs yesterday and it was 120. This is without medication.

On bisoprolol 1.25 mgs daily it is usually 54-64 at rest rising to 80-90 on moderate exertion. I can walk up 2 flights on this dose of bisoprolol. 6 flights would be slow and I would be struggling.

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Hi Oyster. I've just read your reply to Gmc54 & my question is do you have the feeling of the 'worms coming out of your heart' all the time when you are in permanent AF

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Hi TamlaMotown

Most of the time, I don’t know I am in atrial fibrillation. I am much less aware of my heart since becoming permanent. It’s different if I am feeling stressed or have just exerted myself.

What is this bag of worms thing people talk about?

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It seems so strange to hear someone say they don't really know they are in AF when mine is so apparent. I think that's why like Gmc54 has commented that the likelihood of being in permanent AF is quite frightening for paroxysmal AF sufferers. I had a heart rate of 165 & the weirdest feeling in my chest like worms crawling out of my heart so you assume being in permanent AF will be continually like that

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Yes, it’s a frightening prospect. I just wondered if some people have a fast heart rate while in paroxysmal af, and when it becomes permanent does the heart rate settle to a more normal rate, even if with the characteristics of an uneven rate

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Have you considered/discussed ablation. I have been free of AF since I had mine.

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Thenks Oyster. Before your afib became permanent was your heart rate faster? Or has it always been permanent?

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I had paroxysmal AF for 8 years. My episodes were never fast.

It would be interesting to hear from those who had episodes of fast AF who subsequently developed permanent AF.

I believe that rate control with cardioselective beta blockers is first line treatment, with digoxin used cautiously most often in inactive elderly people.

I suppose it may be significant that there don’t appear to be many members with permanent AF discussing problems with controlling the rate of their AF.

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Think you’re right there oyster. People in PAF seem to suffer more than permanent AF folk. Hence not so many posts from them. Do people with PAF feel great and ‘normal’ when not in AF?

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When I started with PAF, I was a nervous wreck, but physically OK. So sinus rhythm was a relief but I spent a lot of the time waiting for the next episode, so not great back then. After 6 months, I accepted it, relaxed and felt fine between episodes,

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I feel fine when not in AF, but dreadful when in having an episode, especially in the first few hours.

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Wow! That rate is nothing but wow compared to insane rates of 150-185

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Hi Spoiler

The rates I gave were for permanent AF. But yes I was lucky that my rates were never fast when I was paroxysmal.

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Hi Gmc54. Do you have the feeling of worms coming out of your heart during an episode?

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No, I just feel generally tired and unwell for the time I’m in af. My chest feels strange, as if I have run hard for while, and after the episode is over it takes quite a while to get back to normal

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Hi, I’m in persistent AF and heart rate between 80/90. Feel ok most of the time. Haven’t really checked it when exerting myself ie walking up flights of stairs or hills. I struggle a bit with these. Have changed recently from Bisoprolol to Atenolol & feel more like my old self.

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Hi Suzy I’m the same as you but on 2.5mg bisoprosol I was on 5mg but felt so tired on that strength!!

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Hi Edm. Are you ok on 2.5 mg? I was better on 1.25 for a while then started to feel bad again. My cardiologist doesn’t know I’ve changed yet as my GP changed it. I am expecting an appointment with him soon for Echo results 😬 will tell him then.

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Hi Suzy yes 2.5mg they took me off them for a while put me on sotalol ready for cardioversion but that failed so back on bisoprosol!! Awaiting call from hospital as to whether they going to do internal cardioversion!!!

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Do you take a anticoagulant too ?? I take apixaban but my hospital want to take me off it ???

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I’m on warfarin as I have an artificial heart valve. Will they replace your apixaban with something else?

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I don’t think so !! They said I am low risk ???

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My situation is more or less the same as Oyster. Unaware of my permanent AF most of the time. Can exercise fairly easily e.g. swimming 500 metres. Resting heart rate usually 55-70, On Bisoprolol 10 mg and Digoxin.

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I am in permanent AF and my heart rate is normally around 80 - 90, hardly ever goes any lower than 80, you do not feel as if you have a can or worms inside you all of the time, some people describe it as a box of frogs jumping around. I am aware of my AF most of the time but it does not bother me too much, my HR is very irregular so often have blips most days, but try to ignore them. I do get breathless walking up hill and tire easily if I overdue things, so just have to be sensible in what I do. When my HR goes over 140 to 200 I do feel really bad same as someone with PAF. I take Nebivolol, Diltazem and Ramipril (have heart failure as well) and Rivaroxaban. My EP has told me the only option for me is a pace and ablate to get the irregular HR under control.

Cassie

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Is there an option to take an extra Nebivolol when your permanent AF goes as fast as that? Is it possible these are actually episodes of fast atrial flutter?

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I have had a few stays in hospital when my HR has gone haywire and my then bisoprolol was increased for a short while, my dose was 5mg, but I could not tolerate above this dose for long, made me feel even worse. I am on 5mg of Nebivolol now. A few times it has gone too high when I have had a virus or when I have been very stressed, in the 2016 both my Mum and Dad died within 7 months of each other. A couple of times i has been because of heart failure problems. Other times it can go to 140 for a while but does not last for too long, just wait it out with slow breathing and meditation. Ups and downs really.

Cassie

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I have persistent AF and the heat rate is controlled by 6.25mg of the betablocker Bisoprolol. I also take an anticoagulant Apixaban. My GP monitors the dose.

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Hi Gmc54

I'm male aged 65 and have had permanent AF for around 12 years. I take Metoprolol, Diltiazem, Warfarin & Simvastatin. I check my heartbeat using an App on my I phone.

My rate is usually between 85-92 resting, it doesn't seem to go much above 120 when I'm exercising (cycling) I don't notice my heartbeat very much when I'm resting, the side effects from the medication are the worst thing, (Fatigue, tiredness all the time & weight gain)

Rgds

Mike

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Hi Gmc54

I am male 73. I have long standing permanent AF. I take warfarin and rampiril to try and keep my blood pressure down. My resting heart rate according to my fitbit is usually about 56. My heartbeat is regularly irregular - I watched it on a monitor this morning after an ECG and the gaps between each spike varied, some slightly long, some slightly short.

So up I got and went off for a 7 mile walk along a fairly flat old railway line that has been made into a footpath, very pleasant watching the leaves starting to turn to gold and red. If I lie on my left side I can hear my heart bumbling along, then turn on my back and relax, finally onto my right side to sleep.

My afib was at its worst when I was in my late fifties and early sixties. Trying to walk up Scafell pike saw the rate increase to about 220 on my heart monitor, at which point I regretfully gave up and retreated from the mountain. as one of my friends said "It appears you have a service ceiling of 2000 feet and a range of about 8 miles - you had better have a refit"

I have been along a steady progression of drugs including the fearsome amiodarone and had a cardioversion. At this point my eldest son said "Your right leg is swollen - get in my car and come with me to casualty." So off we went to check for a blood clot. A Blood test was done and we were informed the result would take about an hour, so we nipped off for faggots and peas.

When we came back I was told " Where have you been - the blood test is positive!". So much prodding and poking and checking went on. By this time I had attracted a bunch of Doctors and student Doctors and uncle Tom Cobley and all, always a good sign. "There is no sign of a clot " Dr Page said" but essentially your heart is failing - I shall write to your cardiologist", and in doing so he probably saved my life.

So off I went for open heart surgery to repair a leaky mitral valve and to carry out a mini maze procedure and heart remodelling. Just before this op I could barely walk 6 steps without stopping for a blow. So problem fixed? Not quite - I still had flutter/ afib. So a year later an ablation was carried out and all was tickety boo, and no pills henceforth.

For a while anyway.

During a holiday I suffered an allergic throat infection and was prescribed anti- histamines to knock it down and in the very small print it stated 'May cause disturbances of heart rythms'. Sure enough the afib snuck in again, but nowhere as bad as before.

So now I have a regularly irregular pattern, but not too bad. I sleep well and keep active. I have been offered medication but on balance I am happy where I am. If I could find an accurate way of measuring my blood pressure I would be a bit happier, but there we are.

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Yor really have been through the mill, and lucky you were seen by the right docs at the right time. but at least you're ok now ok now. 👍🏻

Love your positive attitude.🙂

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I was PAF for 7 years with episodes lasting 8 to 10 hrs with a heart rate 125 to 160. Felt awful. I went into permanent AF in May 2016 and since then never felt better and unless I really push it I am not aware my heart is in AF. My Resting HR is in the range 60/70 BPM. My HR can and does zip up to 100 when starting to walk etc and then settles back to about 80/85. I have stopped chasing the holy grail of NSR and simply enjoy life. I take Apixiban and 1.25g X 2 daily of Bisoporol. I enjoy swimming, cycling, walking. I have a yearly CT scan and there appears to me no dilation of my heart. For me going into permanent AF wasn't a bad thing.

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Thank you for your reply Roy. Did you find that when you went into permanent af your heart naturally started to settle into a slower rhythm the longer you stayed in af?

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HI GMC54. To answer your question...the minute i went from PAF to permenant things improved. My resting heart rate although in AF was between 60-70 bpm i was able to comfortably, cycle, walk any distant, swim. If I go mad gardening, digging, or anything very strenuous my heart rate will go to 115/120 BPM but it soon returns to my new resting normal. I have had a number of CT scans and it would appear my heart is not being re-modelled and there is no dilation of the heart chambers. So for me the decision to leave well alone was the right one...my medication consists of 1.25mg Bisoporol twice daily and Apixiban. Good luck Roy

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Roy :-) you never had an ablation then...

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Hi doodle68. No never had an Ablation, I am a patient at Liverpool Heart and Chest hospital and in May 2016 (i had gone into permenant AF by this time) i had an Ablation scheduled. The day came and I went to the hospital had all the pre-op stuff. The EP came in the room to chat just before I should have gone into the lab. I explained I had gone into AF some weeks previous and I felt OK. We made a joint decision not to go ahead with the Ablation.....A decision I have never regretted. Cheers Roy

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Hi Roy :-) I saw in your earlier post that you had been scheduled to have an ablation but didn't go ahead and I wondered if you had done so later.

It is helpful to read that some people have never had an ablation and are able to live with their AF .

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I consider myself lucky doodle and has i said earlier have stopped chasing around looking for or wishing I was in NSR. I am now of the opinion it is what it is and I simply get on living my life and running around enjoying my lively 5 year old grandaughter. Kind regards Roy

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Don't be afraid of Permanent AF. In many ways, it is much simpler than paroxysmal AF: you know where you are, there is much less uncertainty. Drugs can be used to encourage your resting heart rate into the sweet spot of 60 - 100 bpm. You learn what you can do or not do and how to adjust your life to suit. In my case, I'm lucky, I'm relatively asymptomatic and can do pretty much whatever I like - I've never been one for running marathons! :)

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Hi Chris :-) that's good to hear. I do wonder sometimes when I am having an episode if I made the right decision refusing an ablation but I feel well most of the time apart from during episodes of P-AF and thought why risk what I have now with no guarantee that my QOL will be improved and I could actually make it worse.

I went many months without any episodes of P-AF and thought I had halted it with lifestyle changes but I seem to have had more episodes of late though shorter and less severe partly I guess because my heart rate is being lowered by medication. My resting HR is 40s to 50's a bit low but I don't have any symptoms.

I feel I may eventually slip into permanent AF and it really helps to know that if I do QOL may not be too bad :-) .

I make sure I keep my levels of stamina up by walking at least 2 miles every day at speed which should help my general heart health.

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Thank you so much Chris. You really have put my mind at rest. Even just the thought of having an ablation I find extremely frightening, and now my episodes are getting longer it has always been at the back of my mind how I would deal with permanent Afib, because mine has always been the fast type.

I’m not one for marathons either!! 🙂

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