New sufferer of AF

[pwoody]

I have recently been diagnosed with AF. I have had four attacks so far and find them very frightening, a couple lasting up to 17 hours. My medication is Bisoprolol, Atenalol, Apixaban and Digoxin. Does anyone taking Digoxin find it makes them feel jittery. I have tried taking it at night, but then I wake up with my heart racing. I would appreciate any advice from fellow sufferers on how to manage AF and lead a normal life. I am a 73 year old female

[momist]

Hi pwoody welcome to the forum. I have only had two attacks, so far, the first in May and then again in July, last year. Yes, the first event was very frightening for me, as I didn't know what was happening to me, and I thought I might die.

Luckily, I came away from the A&E with a clear understanding that I had been having Atrial Fibrillation (which reverted to normal some hours later), and once I got home I knew enough to start looking on the internet. I found this forum, and I haven't looked back since. They are a great bunch of people here, and are willing to answer any questions you may have. After only a few days, I invested in a Kardia device for my phone, so that if it should ever happen again I could capture the event. By then, I knew that in general this wasn't going to kill me directly, and that lots of people on here had had problems with the patchy understanding of AF in the NHS. The A&E people, though well meaning and skilled in many branches of medicine, had given me aspirin, and then botched up the referral to the cardiac unit in the same hospital. I had to consult my own GP to get that sorted out, and he didn't seem very concerned about me at all.

The Cardio unit seemed far more interested in my past history of chest pains and the plumbing side of my heart than the fact that I had had a bout of AF. I had an ultrasound scan, an MRI and then a stress test on the treadmill. Nothing followed that up.

The second attack came while I was away from home with my caravan, and I didn't trust the idea of a strange hospital or the ambulance trying to find me in a remote farmer's field. I just sat it out, taking recordings of my AF on the Kardia. That too reverted naturally after six or seven hours. After my trip, I booked to see a GP again, and managed to come away with a referral to an EP at the local specialist heart centre. I'm now on a waiting list for an ablation!

My 'journey' is of course different to everyone else's, and will be different to yours. Lots of people find some relief in 'mindfulness' or changes in lifestyle to try and address the anxiety that comes with this disease. For me, it is knowledge and being 'in control' that settles my mind and lets me get on with life. I rarely use the Kardia now, but it is always there as a back up should I go into AF again. I take bisopralol and apixaban, and hope for the best. So far, so good.

I hope you get some good advice, and learn to live with this in otherwise good health.

[Hidden in reply to momist]

momist

Outstanding reply

[pwoody in reply to momist]

Thank you for your positive reply

[Hidden]

Hello pwoody, welcome to the place you would rather not be!! Great reply from momist which covers most points. The main difficulty with AF is that it effects folk in so many different ways and treatment is equally variable. The first thing you should do is read as much as you can about AF from all the fact sheets available on the AF Assoc webpage and try to get a better understanding as to how AF affects you personally. There are two main types of AF, paroxysmal which comes and goes often without warning and persistent which, kinda obviously stays with you all the time. Paroxysmal can be more difficult to cope with but in many cases, it is more successful to treat, but you need to establish a treatment plan that is right for you and the specifics of your condition. I assume you have seen a cardiologist and the medication you have specified is fairly standard and it's good you are taking an anticoagulant to reduce the risk of stroke. It is often said that no one has died from AF which is great news of course, but for some, it can be very debillitating, so it is important to establish what can be done to improve your quality of life because both AF and the drugs you take, can have unpleasant side affects. As momist mentions, the ideal route is to get a referral to see an Electrophysiologist (EP) as they are cardiologists who specialise in every aspect of arrythmias.

The initial diagnosis and the following few months, as most of us here know, can be a rollercoaster, but it does get better but you may have battle a bit to see the right specialist, which is why it is so important to read up on the condition.........good luck, lots of folks on the forum will add their thoughts too......

[Hidden in reply to Hidden]

FlapJack

Brilliant reply

[pwoody in reply to Hidden]

Thank you for your helpful reply

[BobD Volunteer]

Welcome to our world. May I suggest that you visit AF Association website (they are our prime charity who organise this forum) and read till you drop. Knowledge is power to dispel fear.

AF wont kill you even though if might feel that way sometimes but many of us have been here for lots of years, in my case since AF Association started in 2007. Life is good if you accept that it is different.

[NickiC in reply to BobD]

I absolutely love the “Life is good if you accept that it is different”. It is now my mantra as long as you don’t mind, BobD. Like posting a photo, I will credit you!

[CaroleF]

Welcome pwoody . As has been said .... to the place you'd rather not be! I think everyone here will empathise with feeling frightened by the first few episodes of AF, but as the wise BobD has said - AF (of itself) won't kill you You are taking an anti-coagulant (apixaban) which will lessen the risk of a severe stroke - so that's good. I'm afraid I can't offer any helpful observations about Digoxin since I don't take that Your pharmacist would be a good person to ask about known side effects of this medication and also about whether taking it at a different time of day might help. They are the experts on matters such as this.

The best thing I found in the early stages was to educate myself by reading all the info. on the AF Association website and following posts on this Forum. Knowledge is power and it was also comforting to know that I wasn't the only one with the condition and who was initially scared.

You might find it helpful to join the AF Association (it's only £15 pa) and to attend the Patients Day they hold in early October each year - though admittedly that's a long way off. Last year there was a big emphasis on 'Lifestyle' and particularly on keeping one's weight within the recommended BMI range - so if it applies to you you might find things are better if you can lose weight. Eating in the ways we are all advised to do these days, getting exercise within one's capabilities even if it's just walking every day, cutting down on alcohol and reducing stress will improve your general health and that can all help to reduce AF episodes I think.

Many here have identified particular triggers for AF episodes, though I can't say that I have. However alcohol, caffeine, large meals in the evening, stressful events, are all examples of triggers for some people so you might think about whether any of those apply to you.

You will also find the videos that Dr Sanjay Gupta at York Hospital posts on You Tube a mine of helpful information and advice.

People here are friendly and helpful - and a great source of comfort to many - so do post with any specific questions you have or even if you just want a good rant or a cyber shoulder to lean on.

Carole

[Hidden in reply to CaroleF]

Carole

Another excellent reply. The heavy brigade are clearly in action tonight

as in deep thinkers...

[pwoody in reply to CaroleF]

Thank you so much for your very helpful reply.

[pwoody in reply to CaroleF]

Thank you for your very helpful reply

[Hidden]

Hi pwoody, Welcome to this community. I think you'll find lots of help here. I don't have an answer about your digoxin symptoms but I want to share a couple of things. I am also a 73 y.o. female diagnosed in 2011, It's very scary in the beginning when meds prescribed for you are not working smoothly but 1) this is a journey that often takes much trial and error re medication/treatment care, esp in the beginning before you and your doctor find what works for you. It is part of the process. 2) A-fib isn't usually a life-threatening illness but rather one that will most likely turn into a chronic illness and you will eventually find your best avenue of care. I would say let your doctor know your reactions to meds so he/she can move forward with what will finally work for you. 3) Keep reading the posts and sharing your own info. Many of us find info here to take to our doctors which helps you both develop your own care plan. and 4)-most important, it is very possible to live a comfortable, productive life with a-fib even though it may be hard for you to see now. You are as much a part of your care as your doctors with this disease. Stay with the posts. I believe it will get easier as you go along. Good luck. irina1975

[secondtry in reply to Hidden]

Very much agree with the above, I have Lone Vagally Mediated PAF and gone from huge anxiety/borderline depression to a happier, healthier productive AF free life in 4 years on just Flecainide. Caveat: it involved an open mind on lifestyle changes/diet/supplements, lots of reading here, getting a medical/alternative practitioners team I can trust and backing my own gut feel. Hope you do the same, you can, just keep persevering!

[pwoody in reply to secondtry]

Thank you so much for your encouraging reply.

[pwoody in reply to Hidden]

Thank you so much for your very helpful reply

[BobD Volunteer in reply to Hidden]

Irina, if you stop calling AF an illness and think of it as a condition it does help. Illness suggests something that you might have caught which can be cured. All treatment for AF is only ever about improving quality of life with this long term condition.

[Hidden in reply to BobD]

Thanks Bob. Good point. Will try to rememberto dothis. If you notice I frequently try to use the word 'procedure' when talking about surgery. I think it sometimes helps patients be more relaxed. Semantics are important. So I will try to switch terms. I'll probably forget from time to time. Please feel free to remindme. Thanks irina1975

[BobD Volunteer in reply to Hidden]

Oh yes Procedure. I have used this term for a long time. Surgery suggests knifes and lots of blood which ablation is not even if it is a serious assault on your poor old heart which is why we try to make people rest for a couple of weeks. There are so many wrong terminologies out there and of course my all term favourite "blood thinners" which I am sure makes people think that they will spontaneously bleed .

There was a great cartoon going round a few years ago titled " The Pedants Revolt". The king was saying to the rabble "I thought there would be less of you" to which the rabble shouted back " FEWER!"

[Hidden in reply to BobD]

Right on. We never know what we think of as an innocuous term will conjure up in someone else's mind. I like your story.

[Hertbeat321]

Welcome, to our world, fabulous answers you have, and don’t be afraid of asking anything, no question is stupid , I was put on digoxin on my first visit to A&E. Back in June last year, then saw a cardiologist and he took me off it, his thoughts on that day was it wasn’t needed, as I quickly went back into nsr, normal sinus rhythm, also I was on bisoprolol, and an anticoagulant, which as been said prevents the chance of a stroke.

Main thing for me was fatigue with the bisoprolol but I went with and broke the barrier in about three weeks, the only fear I had was if my heart rate went to low, which it did, on those occasions I made myself go for a walk, to speeds things up,,as for me to low heart rate was also adding to my fatigue.

Much better off digoxin but I didn’t have any jittery feelings on it.

Your meds can be reviewed when you visit the cardiologist I pushed to come off bisoprolol and finally I got it changed because I went back into AF last Friday, and they wanted to increase my dose, I’m thinking more fatigue for me anyway, and I explained I’m in a new job, I’m a bit stressed about it,, of course so don’t want to be sleepy, wouldn’t go down well,,,so now I’m on nebivolol 2.5mgs. So far so good. Seeing an EP in feb. I phone the cardiac support nurses, leave a message and they always get back.

Good luck,

[Zabadak]

Hi pwoody

I’ve had it for a year or so and getting the right medication is important. GPs lack knowledge to fine tune it, so make sure you see a consultant. I was on same meds as you but I had concern about some research that warned against digoxin with apixaban. This is a new study. My GP had not seen it and asked for my copy but took it seriously. I was later taken off digoxin and bisoprolol and put on verapamil by cardiologist. Been a lot better since. But it’s all very individual. Best thing I did was pay £140 for a private appointment with cardiologist- same one I see on NHS but I got an hour with him to ask questions and he adjusted meds.

[rosyG]

Lots of good advice given here- I would add that Digoxin is not suitable for what is known as Vagal AF- this is what a minority of AF sufferers have- it is restricted to night time/ after large meals and when relaxing- so make sure, in conjunction with your doctor,that it is suitable for you.

[Buffafly]

Only one thing to add to the excellent posts above, you are lucky to have AF now! Explanation, I am 73, diagnosed about 16 years ago. My father had AF so I had seen how it affected his life. I spent several days in hospital (weekend!) and finally had a visit from a Cardiologist who ran rapidly through explanation and options for treatment (all of which sounded very drastic) and discharged me with a prescription for Warfarin to await cardioversion, not needed as rhythm reverted naturally. There was very little info available and the link between AF and serious strokes had not been recognised. So I just went on with this threat hanging over my head and no treatment or helpful information or support. Things moved on slowly, my condition deteriorating but the treatment and info improving until I had an ablation two years ago. I'm having a few little problems again but even in two years treatment etc has improved.

I lead a pretty relaxed life, it depends on your definition of 'normal life' whether you can continue as before except for episodes (I usually curse a bit if one starts), eg endurance athletes usually have to scale down their program.

Best wishes, still lots to look forward to. (I entertained my children and grandchildren at Christmas in spite of an 'inconvenient' blip, just needed good organisation!)

[pwoody in reply to Buffafly]

Thank you for your helpful reply

[Hidden]

Sorry to hear of your condition. Have you ever been diagnosed with sleep apnoea? If not, it is worth checking it out. The NHS do not like to link apnoea and AF but most of Europe and the US accept this linkage. Since I was given a CPAP for my apnoea I have stop having incidents of AF. So please have a word with your GP and also do some Internet research on AF and apnoea. Every good wish.

[pwoody in reply to Hidden]

Thank you for your advice

[BevCynfelyn]

Hi, Bisoprolol made me very sleepy, so I now take it in the evening along with the apixaban and flecainide second dowses before I go to bed. doesn't matter then if I'm sleepy or a bit breathless because I'm asleep pretty soon afterwards....much better!

I was originally on digoxin from leaving the cardiac unit to go home until I returned for a cardioversion 3 months later, it was later replaced by flecainide when I went back into AF two months later as digoxin is considered to be a potentially dangerous drug by some doctors

[pwoody]

I also take Bisoprolol and Apixaban in the evening which works. I have an appointment with my GP on Monday and will speak to her about Digoxin. I have never been referred to a cardiologist inspite of being admitted to A&E on one occasion when I was prescribed digoxin for the first time. Thank you for your helpful reply.