Atrial fibrillation

Read personal stories from myheart members with atrial fibrillation.

Watch CRY Patron Tom James MBE talk with Professor Sharma about his experience of finding out and living with atrial fibrillation.

What is atrial fibrillation?

Atrial fibrillation (AF) is the most common heart rhythm disorder. It affects around 1-2% of the overall population. It is more common in men and is increasingly common as people age [1]. While it is associated with other medical conditions such as high blood pressure, obesity and other types of heart disease [2], people who are otherwise fit and healthy may still develop AF.

AF occurs when the electrical signals in the heart’s upper chambers, the atria, become chaotic and disordered, overriding the heart’s natural pacemaker. This causes the heart to beat irregularly. The heart rate is highly variable and can beat very fast and in turn very slowly. This irregularity affects the efficiency of the heart and can reduce the amount of blood it is able to pump around the body [3].

Early in the condition, AF will occur for a short period before the heart corrects itself and returns to a normal rhythm (this is known as paroxysmal AF [4]). Left untreated, these episodes last longer and it becomes more difficult to restore the heart’s normal rhythm before eventually the heart rhythm remains irregular (i.e. in AF) permanently [5].

What symptoms does AF cause?

The symptoms of AF vary between people, and many people are not aware of any symptoms at all. The most common symptom is palpitations. They may be associated with chest pain, light-headedness, breathlessness and fatigue [2]. They may start suddenly and last for a few minutes to several hours. Often there is no pattern to when the palpitations occur but there may be particular triggers for some people. These too are variable and include exercise, emotional stress and alcohol [4].

As AF becomes chronic and long-standing sudden palpitations become less common. When the symptoms are less obvious, people may complain from breathlessness, a lack of energy or fluid retention [2].

How is AF diagnosed?

AF causes an irregular pulse that can often easily be felt at the wrist. In asymptomatic individuals, this may be the only sign of the condition and finding an irregular pulse should always raise the suspicion of AF [4]. Formal diagnosis requires an ECG that shows the chaotic electrical activity and irregular heart rhythm. Several ECGs or a prolonged recording may be needed for people with paroxysmal AF since the ECG is frequently normal between episodes [4].

In addition, other tests may be required to look for associated conditions. These may include an echocardiogram to look at the structure and function of the heart or a prolonged ECG to monitor the variation in heart rates during the day and night.

What are the risks of AF?

Although the symptoms of an episode of AF can be very unpleasant, an acute episode is not life threatening and can often be managed at home with an appropriate support and treatment plan.

The most important potential risk of AF is having a stroke [6]. A person’s risk of suffering a stroke is 5 times higher if they have AF [4] because blood flowing through the heart’s upper chambers (the atria) can slow, allowing small blood clots to form, particularly in the left atrium. These blood clots have the potential to break off and travel through the bloodstream blocking blood vessels in other organs such as the brain, where they can lead to a stroke. The risk of an individual with AF having a stroke is not related to the number of episodes of AF they have, but to the presence of other conditions that can independently increase the risk of having a stroke. These include heart failure, high blood pressure, diabetes, arterial disease (such as coronary artery disease or peripheral vascular disease) having had a previous stroke, and increasing age [4]. Females are also at a slightly higher risk of stroke than males as they get older [7].

AF can also lead to memory problems and cognitive decline [8] and is a common cause of hospital admissions [7].

How is AF treated?

Like many things related to AF, the treatment options are varied and complex and should be tailored specifically to the individual. There are three broad focuses of treatment: prevention of stroke; maintaining the heart’s normal rhythm; and preventing the heart beating too fast when in AF.

Stroke prevention is the mainstay of treatment in AF. For the vast majority of patients this is done by means of thinning the blood with medications known as anticoagulants so that clots cannot form. Traditionally warfarin has been the only effective drug and is still used widely today. However, there are now several other anti-coagulant drugs that are useful in AF [8]. The decision over which one is right should be discussed between the patient and their doctor. Aspirin is not recommended for stroke prevention in people who have AF [4].

For those people who cannot take anticoagulant medications, a device can be implanted in the left atrium of the heart to prevent blood clots breaking off and entering the bloodstream [9].

Keeping the heart in its normal rhythm and preventing the recurrence of AF is another important goal of the treatment of AF. Medications called antiarrhythmics can be used to help achieve this. There are many available and each has particular benefits and considerations to take into account. Commonly prescribed antiarrhythmics in the UK include flecainide, sotalol, dronedarone and amiodarone [10].

Another option for the prevention of AF recurrence is an ablation procedure. Ablation of AF aims to prevent the disordered electrical signals seen in the atria during AF. Wires called catheters are introduced into the left atrium of the heart via the femoral vein at the top of the leg. Once in the left atrium, these catheters are used to cauterise specific areas of heart tissue to prevent the abnormal conduction of electrical signals. Ablation is an effective treatment for preventing AF in the short and medium term and although it does not offer a permanent cure it can reduce the need to take antiarrhythmic medication [11].

When an episode of AF occurs, normal rhythm can be restored with a procedure called a cardioversion [4]. This involves giving a controlled electrical shock to the heart while the patient is under conscious sedation or anaesthesia. The shock stuns the electrical tissue of the heart and allows the natural pacemaker to restore the normal heart rhythm. Intravenous medication can also be used instead of or in conjunction with the electric shock.

Since it is very difficult to get rid of AF permanently, an alternative treatment option is to prevent the heart beating very fast when AF occurs. This is because it is when the heart beats very fast that most symptoms occur. The most commonly used family of drugs for this are beta-blockers although others such as calcium channel blockers and digoxin may also be used [4][10]. For those individuals who have AF with slow heart rates, an electronic permanent pacemaker can be used to prevent the heart beating too slowly.

The treatment of any individual with AF will be spefically tailored to their particular situation, depending on their symptoms, type of AF, and other medical history but will involve a combination of the strategies discussed above .

AF in young people

While AF is more common in older people, it can affect young people in the absence of any other heart problems. In this situation there may be an underlying genetic cause such as a problem with a sodium channel in the heart. These sodium channels are important for determining the electrical properties of the heart and problems can lead to a number of heart rhythm problems including AF.

The treatment of AF in young people is similar to that described above. In general the risk of stroke in young people is lower so there is less need for anticoagulant medications [8]. In addition, ablation may be recommended more commonly as the initial treatment in young people with otherwise normal hearts as it has been shown to be as effective as antiarrhythmic medication in such patients [12].

AF in pregnancy

A first episode of AF during pregnancy is rare in women without previously known heart problems. Around 50% of pregnant women who have pre-existing AF have an episode during their pregnancy [3].

Many of the drugs commonly used for the treatment of AF have potential problems in pregnancy: beta-blocker drugs may cause reduced growth of the foetus. Alternatives such as verapamil and diltiazem are generally safe. Amiodarone can cause harm to the foetus and should only be used in emergencies. Electrical cardioversion has been used safely in pregnant women. Regarding anticoagulants, warfarin is known to harm the foetus and should be avoided. The newer anticoagulant medications are also not recommended. Daily injections of low-molecular weight heparin (LMWH) can be used in their place at much lower risk [4].

AF in athletes

AF has been shown to occur more frequently in men who participate in prolonged strenuous exercise such as endurance sports [13][14]. This is most likely due to the structural and functional changes seen in the heart in response to prolonged exercise.
Treatment options are often slightly different since beta-blocker drugs are not well-tolerated in athletes and other drugs may not be potent enough to treat the fast heart rates that can occur with exercise-induced AF. Therefore ablation therapy may be considered earlier. Individuals taking anticoagulant medications cannot participate in contact sports due to the risk of bleeding [4].

Watch CRY myheart cardiologist Dr Michael Papadakis talk about why people with ICD are not allowed to play contact sports.

Please click here for references to text

Antony Eames

Tony Eames wrote his story to be included in the myheart booklet which was launched in November, 2013.

Tony

I had my first episode of fainting at 4 years old. From then on I passed out regularly. Sometimes I passed out several times a day. During this time I was not allowed to do any school sport or go out in the playground.

I was never invited to other children’s parties as parents were so concerned that I might pass out. I even had to be escorted to and from school and around the school so that I was never alone in case I fainted.

These attacks continued on a very regular basis until it was finally suggested that I had an ECG and was diagnosed with long QT syndrome, a rare heart condition that can cause sudden death in the young, at the age of 12.

For eight years my family doctor had treated my fainting attacks as epilepsy and panic attacks. It was suggested that I be sent to a psychiatric institution, something my parents refused to allow. No-one had tested my heart and all the time I was at risk of a sudden fatal attack. I don’t understand why it took so long for someone to think it might be a cardiac problem and not mental at all.

After my diagnosis I was put on medication to regulate my heart rhythm. At the age of 18, when in my final year of A levels, I became ill again and required a pacemaker implant to back up my medication. My family and I were devastated to be told I needed an implant as I was now enjoying my teenage years after a traumatic childhood.

Soon after the implant I left the security of home for University life in Newcastle. However I decided from the start to be open to my new friends about my heart condition and pacemaker. This gave me confidence, which was seriously lacking during my childhood.

The implant has enabled me to do far more strenuous exercise. Table tennis, jogging and visits to the gym are regular activities. It is fantastic to be free to participate in so many things that for so long I could not even think about trying. Last year I tested my own confidence and achieved a major personal goal by abseiling down from the Tyne Bridge for charity. This really did test my heart and my parent’s nerves!

Through CRY, my story may help further publicise awareness to the health professions and the public of why young children may be dying suddenly and the simple tests that are available. After hundreds of fainting episodes, a pacemaker fitted and taking daily medication I regard myself as one of the lucky ones and intend to live life to the full.

  • Tony

Julie Mills

Viral myocarditis

My story began in August 1998 when, in my third year of a four year teacher training degree, I felt unwell and left my holiday job early. I was in the middle of my shift and I had a pain in my chest and a headache and I thought I just had a virus.

The chest pain got worse in the night and I went to the doctor on Monday morning.

I did have a virus. Unluckily I was among the one in a million in whom it attacks the heart.

My condition, viral myocarditis, which at the time was yet to be diagnosed, is often fatal. My GP was concerned and took some blood for tests.

He asked to see me on the Wednesday. He was not happy with me and we went straight to the accident and emergency department at East Surrey Hospital, Redhill, for an ECG. They admitted me immediately to the ward.

My condition was deteriorating rapidly. My heart was incredibly swollen and was not pumping blood to my body and was itself being starved of blood.

The next day, Thursday, I was transferred to the high-dependency unit at Middlesex Hospital, London. There were more tests and I was moved again to the intensive care unit. By now there was great concern and the last thing I can remember before losing consciousness was my parents saying goodnight. I didn’t know, but they had been told that this goodnight might also mean goodbye.

Things moved fast. My only hope now was an immediate move to the John Radcliffe Hospital in Oxford, where surgeons were known to be developing new types of artificial heart. I was taken to the hospital by special intensive care ambulance, accompanied by a nurse and two doctors.

My parents followed in their car. They were told it was not known if I would survive the journey, which took an hour and a quarter. We got there about 4am. They were going to do the operation at 9am, but they brought it forward by an hour. They thought I had about 20 minutes left.

I had almost no natural pulse and my blood supply was so poor that my kidneys had also stopped working and I needed renal dialysis as well. The surgery took four and a half hours.

The next thing I knew was when I came round six days later. There were tubes everywhere. I was sedated and I had no idea of what had happened to me. I lost a week of my life.

After only six days the inflammation and swelling had subsided and they decided that my own heart was working well enough to take the pump out.

I am now very well. I am still on medication but my life has returned to normal. I take part in lots of amateur dramatics and over the last couple of years I have even appeared in 5 one night shows in West End theatres.

Francesca Maretic

Living with Wolff Parkinson White syndrome

My name is Fran and I’m an average girl except for the fact that at the moment I have Wolff Parkinson White syndrome (WPW). WPW means I have an extra pathway in my heart and sometimes my heart will beat really fast because of this.

The first time I found out about my condition was on my Prom night (Friday 13th – talk about unlucky!). My friend and I got ready and we were really excited! We left her house and then we had to face a huge hill, in high heels!

Anyway, we met up with our dates and we walked to the Prom. When we got there I felt fine – we all started dancing and having some food and drink and we were having a great time! Then about ten minutes before the end of Prom I felt so tired! I couldn’t understand why. Everyone was calling me over to dance and I did, but I was shouting “I’M SOOO TIRED!!” By then it was the end of Prom. I said goodbye to everyone and set off to my mum’s car to go home. I got in the car and that feeling came back, “Mum, I’m sooo tired. I have to go to sleep when i get home.” “Why, what’s wrong?” My mum said. “My heart, it feels weird – it feels as if its going 150 mph!” – And wow, I wasn’t wrong.

I got home and just lay on the sofa. My mum knew something was wrong so she called the doctor, who called the ambulance! I was so scared. I had never been in an ambulance before – what were they going to do to me?! Then they turned up. “Hi Francesca, what’s wrong? How are you feeling?” said the paramedic. “I just feel so tired and my heart feels like its going really fast!”

They took my pulse and listened to my heart. “Darn thing, why wont you work? Silly cheap NHS stuff!” said the first paramedic. There was another medic doing something else, taking my pulse. “No that’s right what your hearing!” “OK we need to take her to hospital straight away!”

My mum had no time to prepare, she was running around trying to get her things together. I went into the ambulance and on the way to the hospital there was a traffic jam. Because of the ambulance everyone was staring at me – it was like a thousand eyes were watching me.

When we got there the nurses wired me up and then I saw what my pulse was 250 per minute! I couldn’t believe it – I knew something was wrong as I did some work in school and knew my heart was supposed to go at 70 per minute. There were two people trying to inject each hand. One of them got the needle in but smashed a bottle by knocking over the trolley. The other couldn’t find a vein to put the needle into – it took him three times to get it right! Then I felt the drug go into me and it felt like I was about to pass out, except I didn’t and my heart went back to normal! I was so relieved. All I can remember after that was being in a bed falling to sleep.

Since then I have been on tablets called atenalol and they make me really sleepy. I have been feeling so ill lately, but I will soon be having an operation so it will all be over! And I’ve got my great friends and family helping me along the way!

Jenny Justice

Living with Wolff Parkinson White syndrome

I had Wolff-Parkinson-White syndrome (WPW) when I was a child. I remember waking up because my heart would start beating very rapidly and for about 2 or 3 years my parents thought I was exaggerating when I told them my heart was beating fast.

As I grew into a young teen I became very active in sports and found my WPW to be getting worse and worse.

My father finally took me to the hospital one day because I had a three-day long episode and my body was starting to turn blue. It was then I was diagnosed and put on medication.

Then within about a year I was in about eighth grade. I became even more active in sports and I started to black out in the middle of running exercises and such.

On a regular visit with my cardiologist I told him what I was going through and how frustrating it was for me. After we finished the appointment he basically told my father and I that the next time I had an episode where I blacked out like I had been doing, I could easily slip into a coma and not come out.

It was then we decided to have the ablation done. I was out of the hospital the next day and have not had any sort of episode since. It was pretty much one of the best decisions I have ever made.

Paul Cooper

Living with atrial fibrillation

My story began 19 years ago – I am 39 now.

I was out with some mates one night, when I felt a funny ‘butterfly’ feeling in my chest – it felt like my heart was racing.

That night I went to the hospital with my mate and they did an ECG.

My heart was doing 188 and was all over the place. I was kept in for 6 days on the cardiac ward.

They found the problem – atrial fibrillation. Since then I have been in hospital with this 6 times. Last year they took me off the medication, but within a year I was back in hospital again with the same problem and I am now back on the medication.

But despite this, I want to let other people who have the same problem know that you CAN lead a normal life.

Lucy Patey

Living With long QT syndrome

I have always been a fit and active person, participating in many sporting activities – two of which were hockey and horse riding, family passions that I inherited. During my teenage years I competed at top level both on horseback and on the hockey field.

Looking back, I was given so many warning signals – dizzy spells, heart palpitations and severe tiredness – all of which I ignored and simply put down to exam stress or a tiring day on the sports field!

In 2004, I joined P&O Cruises and became a member of Youth Crew looking after children, a fantastic opportunity but a job which is known for its long working hours and solid 5/6 month contracts. During the summer of 2005 I had a series of blackouts or what were also thought to have been panic attacks on-board the ship. My colleagues, along with myself, put this down to working and playing too hard, a poor diet and the tough summer holiday season taking its toll. After a couple of days rest, I seemed to be better.

It wasn’t until Boxing Day 2005 that another collapse occurred, leading to a massive seizure. The ship’s medical staff referred me to a hospital at the ship’s next port (Nassau in the Bahamas) where, after 48 hours, I was flown back home to London. Luckily for me, I had some good friends on board who managed to pack some personal belongings together for me to take home.

After the New Year, I was sent as an inpatient to St Thomas’ Hospital, London, where specialists examined my situation. I will always remember that week, it was my 23rd birthday! Neurologists initially believed that I had epilepsy, however, testing for this came back negative.

I was obviously very happy and very ready to go home, but the neurologist advised me that a cardiologist wanted a quick word with me. On his arrival, I was told to get back into bed and the cardiologist explained that something had been detected on a routine ECG. He couldn’t let me go home and needed to keep a close eye on me for a further 72 hours as “you could walk out of the front doors of the hospital and drop dead.” I was so shocked, I was speechless!

He explained I had something called long QT syndrome which was the cause of all my blackouts and fainting. I was put on a beta-blocker and told to report any further episodes. After a further two, much more serious collapses, the decision was made to give me an implantable cardioverter defibrillator (ICD) which was implanted in the right side of my chest in June 2006. Due to all of this I was no longer allowed to continue my career at sea. Naturally I was devastated.

The surgery for the implant seemed to go well with nothing more than the usual discomfort. However, as time went by I began to experience an increasing amount of pain in my implant site. Stabbing pains would shoot through my chest like bolts of lightning, making me double over with the pain. After months trying unsuccessfully to resolve the pain, the decision was made to re-locate the ICD to the left side of my chest. This was done in January 2008.

The relocation went well but my recovery period seemed to last forever and the pain from the procedure was immense!! I really wasn’t myself and was constantly feeling run down, tired, lethargic and if going out and about would need constant breaks to rest. My legs would seem to collapse underneath me and coupled with this my whole chest was throbbing in pain from the past procedures. I now have severe keloid scarring and my GP has also diagnosed me with M.E (myalgic encephalopathy).

My GP and cardiologists have concluded that my body is unable to withstand invasive surgery of any kind. Tissues and nerves that have been interrupted from past procedures are unable to heal and thus, this is the cause of my discomfort. The pain in my implant site again became so severe that in August 2008 I had my ICD completely removed to try to reduce pain. However, I now am anxious that as I have long QT, am at risk of sudden death and feel that I should really have an ICD for that “just in case” moment!

With regards to the keloid scarring, plastic surgeons have decided to operate and perform radiotherapy which, given time, could greatly improve my situation. I am now 25 and feel as though I am living the life of an elderly person!

It seems that my long QT has arrived with more than just a little baggage and as a result my lifestyle has hugely altered.

Editor’s note: Lucy’s experiences of extreme pain in her ICD site and keloid scarring are not necessarily typical of people diagnosed with long QT. Long QT is a complex condition and the symptoms and side effects can vary according to the type of gene involved, sex, age and length of the QT interval.

Lyndsay Morton

Living with Wolff-Parkinson-White syndrome

When I was 19 I was woken by a paramedic at 3am one morning. The paramedic had been called by my partner because I had stopped breathing and started fitting in my sleep.

Subsequently I was told that I was “stressed and its nothing to worry about”!

I kept getting severe palpitations – often out of the blue – which would make me pass out at times and feel quite sick.

I was still informed I was having severe panic attacks and learnt to deal with these symptoms.

On New Year’s Day in 2001, I collapsed with a severe chest pain and palpitations of 228 bpm. I was rushed in to hospital where they had to stop my heart beat and revive me. After several days of very frightening tests I was finally diagnosed as having what was then thought to be a very rare heart condition – Wolff-Parkinson-White syndrome (WPW). I was sent home to live ‘a normal life’ on two beta-blockers a day.

Two days later I was being revived by paramedics in my bed, as again I had turned blue with a heart rate going up to 200-240bpm and had started to fit. That night I was rushed into hospital and operated on within hours to undergo the cardiac ablation procedure.

After five hours in surgery and a week in hospital to recover I was informed how lucky I was to have gone through such a traumatic experience.

To this day I am grateful to still be here, and even more grateful to have had my daughter after being told that my heart may not be strong enough to go through pregnancy. I do still suffer palpitations and chest pains and continue to undergo tests and wear heart monitors several times a year.

Claire Herridge

Living with left ventricular wall abnormality

A year and a half ago, when I was 34, I was out running when I experienced heart palpitations, chest pain and shortness of breath. I was taken by ambulance to Southampton General Hospital.

This was a shock to me as I am a PE teacher and have always lead a reasonably healthy and active life. After a few hours in hospital my symptoms had settled and I was just about to be sent home when a doctor asked for an ECG as he still wasn’t happy with my heart rate.

This was taken and it showed a massive abnormality. After several ECG’s, echocardiograms and then an MRI scan, I was diagnosed with having a large mass in the left ventricular wall of my heart.

This resulted in me having open heart surgery to have the mass removed. The surgeons said it was the size of a tennis ball and if I hadn’t recently seen the photographs of the operation I wouldn’t have believed it myself….. but it really was that big!

The mass was benign and I am now feeling good and am hoping to start running again soon. I take beta-blockers every day and have resumed my job as a PE Teacher.

The doctors still don’t know why this mass occurred and apparently the condition is extremely rare, but they continue to research as to why and how it occurred.

Jonny Goode

Living with long QT syndrome

I love Sport! Any kind of sport and ever since I remember I have spent most of my spare time either hitting a ball, pedalling a bike or running around somewhere.

It came as a great shock to me when I was diagnosed with long QT syndrome at the age of 23.

The way I discovered I had the syndrome was by complete chance. I had been out surfing in Cornwall and that evening had really bad chest pains. At the time I thought I was having some kind of heart attack as the pain was so severe. On returning home I got checked out and was told that it was pericarditis. At the follow up appointment I had an ECG and it came back as abnormal, from there I saw a number of doctors until I saw a specialist in long QT syndrome. A blood test was taken and almost a year later it was confirmed that I did have the syndrome.

I was told that I would have to take a beta-blocker each day and my specialist then reeled off a long list of potentially dangerous things for my syndrome. The one that stuck in my head was not swimming in the sea; this was interesting as at the time I was working as a surf instructor and beach lifeguard!

To be completely honest and without wanting to sound arrogant or complacent I haven’t changed much since I was diagnosed with the syndrome. I have a faith in God and believe that he has my number and when my time is up, I will get to run around in heaven. Life is too short to worry. My family is my life. I have a two year old daughter called Poppy and my wife Miranda is pregnant with our second baby due in October.

I look after myself and so don’t drink alcohol or caffeine. I exercise everyday and love pushing my body to the limit. One of my favourite moments is when I finish a race or event and I get to present Poppy with my medal.

In April I ran my third London Marathon, I ran for CRY and feel compelled to help people understand that despite having long QT syndrome it doesn’t have to stop you enjoying life and competing in events whatever sport you enjoy.

This August I will be competing in my third London Triathlon hoping to get in under 2hrs 20mins.

I have completed charity bike rides from John O’Groats to Lands End, Calais to Nice and in a few weeks I am cycling from Nice to Naples. I coach cricket, football and tennis to young people in North Devon and love the way sport can teach valuable life skills and bring the best out in people.

Long QT syndrome doesn’t have to stop you doing what you love. For me it makes me realise who I am and it makes me feel alive.