B’s story of living with ectopic heart beats, SVT and vagal AF

When your rhythm is a dancer

Living with heart rhythm disturbances

It started around four years ago. I am in the middle of my 40s, married, father of two children and successful in my job. I suffered from some kind of burnout due to heavy workload and as a consequence thereof I had some trouble with my stomach and heartburn. My GP sent me to hospital for some days to get a clinical internist checkup. They performed some blood tests, a gastroscopy, heart echocardiography and a treadmill test. I passed all tests successfully. All they’ve found was a minor inflammation of the oesophagus, so they sent me back home with one last test – a 24 hour holter ecg. Some days later my GP called me in to discuss the results. During the night the ecg monitor recorded an episode of paroxsysmal atrial fibrillation and my GP was concerned that I am too young for this condition. He opted for a specialist referral and sent me to a cardiologist. When I left GP’s surgery I was confused and anxious.Sure: I was definitely overweight but beside that I always have been in a good condition. I have never had any trouble with my heart before. Ectopic beats, supraventricular tachycardia, atrial fibrillation? Never heard about!

In the months after the diagnosis I became aware of heart sensation. I felt many ectopic beats and I had to fight with supraventricular tachycardias (SVT). I experienced episodes of atrial fibrillation on a regular basis, lasting up to 24 hours. My cardiologists told me that I have a structural normal heart. They explained the system of the CHA2DS2-VASc-Score to me and that I do no need to go on blood thinning medication due to my score of 0 points. I was told not to fear the arrhythmia. That was easily said and in the first year I went to the emergency room several times. The sudden onset of SVT and long lasting episodes of atrial fibrillation turned my life to a mess. I stopped working out, avoided to travel and started to withdraw from social life. The unpredictable character of the arrhythmias became a burden for me and my family. On my darkest days I did not want to leave the house anymore, driving with the car on the highway was a real challenge and performing at work was hard as hell! My condition became worse. Each and every week I had around three episodes of atrial fibrillation, most of them longer than 12 hours. Between these episodes I had nearly daily episodes of SVT and many different patterns of ectopic beats. There was hardly one day without any heart rhythm disturbance and I really struggled to handle it. While writing these lines I still face all of these arrhythmias on a regular basis. However: These days I am doing much better and I am really confident that I am on track back to normal!

Ectopic beats

One of the biggest (and common) mistakes I made was to become highly aware of each and every heart sensation. In the first years I developed the tendency to constantly observe my heartbeat and I became aware of ectopic heart beats. These beats are normal and benign – but that’s something I had to learn.

My experience:I feel ectopic beats each and every day. Sometimes I feel just some single missed beats – sometimes I experience frequent ectopic beats within a period of minutes or even hours. Then I have to deal with patterns like 1 ectopic in 2,3,4,.. beats and also couplets or short runs. The condition with one regular beat followed by one (bigeminy) or two (trigeminy) ectopic beats is the most uncomfortable one for me. The ectopic beats seem to be the reason for my atrial fibrillation and the SVTs. When I feel that my heart is very irritable and I experience lots of ectopic beats it’s definitely more likely that an Afib/SVT-episode will start.

That helps me: I have to get moving. My ectopic beats will typically get better when I start walking around or while doing sports. Unfortunately they have the tendency to come back when I rest. I am doing much better since I have accepted that these beats are a part of me. I do not worry about them anymore.

Supraventricular tachycardia (SVT)

This condition is the most uncomfortable one for me. The sudden onset of a fast rate always makes me feel unwell.

My experience:While being in SVT my heart rate goes up to 150 to 180 beats per minute. In most cases I am able to stop an episode within less than a minute. They rarely last longer than 5 minutes. However: On days when I feel that my heart is very irritable and I experience many ectopic beats I have a tendency to have multiple SVTs during the day. Sometimes an episode is followed by ectopic beats – re-starting the SVT again. On really bad days I experience several SVT runs.

That helps me: I am able to stop an episode within less than 60 seconds by sitting straight and breathing slow and deep. The episode will typically stop with a big thud while exhaling. I can feel it coming. Lying down also works very well. Other maneuvers like drinking cold water or carotid massage do not work for me. There is also a huge mental component. In the first months I completely stopped doing anything after an SVT episode occured. Today I just keep on doing what I did before the episode started. I know that that SVT is not considered to be a dangerous situation – so I try to take it as lightly as possible.

Atrial fibrillation

Since I have a structural normal heart and no relevant co-morbidities beside being overweight, my atrial fibrillation is classified to be lone atrial fibrillation. This condition is not really dangerous in the first place. The biggest risk while having atrial fibrillation is the risk of stroke. According to my personal CHA2DS2-VASc-Score I am not on a significant higher risk than a similar healthy person. This may change in the future by simply getting older – no matter if the afib is treated or not.

My experience: Most of my episodes start in the late hours or during the night. This makes it likely that I have to deal with the vagal type of atrial fibrillation. My rate while being in afib is typically around 90-100 beats per minute. My episodes are paroxysmal and they always convert into sinus after a certain time period. The longest episode I ever had lasted around 24 hours. I do not feel very well directly after an episode started – and sometimes also when it’s close to its end. Most times it’s simply the change from sinus to afib that makes me feel uncomfortable. Before an episode starts I typically feel some ecoptic beats coming up, sometimes I notice a slower heartbeat. The longer an episode lasts the better I am coping with it.

That helps me: I learned to keep calm. In the beginning I spent nights waiting for my rhythm to convert back to sinus. It took me months to learn to take it easy and just to go to bed like usual. I found out that physical activity can be very helpful. Sometimes getting up in the morning is simply enough to stop the fibrillation. I observed a few times that my rhythm converted soon after quickly stepping up the stairs to my company’s office. Some weeks ago I had an appointment with my cardiologist for a regular checkup. When I visited him I was in atrial fibrillation. Good timing! After the echocardiogram he asked me to perform a treadmill test. I was skeptical because I am not really powerful while I am in atrial fibrillation. Surprisingly my rhythm converted back to sinus just two minutes after I started the test.

Anxiety and symptoms

I experience physical symptoms while facing my arrhythmias. Unregular heartbeats directly affect the cardiovascular system and can make me feel dizzy and feeling overall unwell. The much bigger problem is the mental component. The fear not to know how far the current episode will go, if I will pass out or if the episode will become dangerous can make symptoms worse. I experienced that vicious cycle where physical symptoms create fear and fear creates physical symptoms. Unfortunately anxiety is not just a private problem – it extended to my whole family. No wonder since they have seen me suffering for a long time, including ambulance rides, emergency rooms and clinical stays. They have seen me withdrawing from social life – with all the effects for our family life.

However: After dealing with this situation for more than four years I can state that I never passed out, I never had to be cardioverted (even if the MDs in emergency rooms considered it) and my rhythm always found the way back to sinus. Keeping that in mind helps me to stay confident even on the rough days. Step by step I am recapturing the life for me and my family.

Triggers and causes

I spent months searching for triggers and causes. Whenever I thought that I identified a trigger, I soon found myself back at the starting point. I can say that there are definitely triggers for my ectopic beats – bloated stomach after heavy meals, cold drinks, alcohol, certain postures for example. But these triggers just occur when my heart is more irritable anyway. There are days with many ectopic beats of all kinds. On these days I try to avoid the known triggers. On other days I can do whatever I want without any problem.

Causes: I think there’s a genetic component that slowly came up after my 40thbirthday. One of my arrhythmias is SVT, that’s usually related to an accessory pathway – definitely genetics. Having SVT, atrial fibrillation and many ectopic beats altogether can simply be bad luck. On the other hand I lived a bad lifestyle for many years. Overweight, too much stress, too much alcohol, bad diet, not enough sports. I am sure that these facts contributed to the development of my symptoms. I am sure that there’s also a big mental component. After becoming aware of the atrial fibrillation I spent a long time listening to my heart rhythm and learning about the conditions. I became anxious about the arrhythmias and potential complications. Today I am sure that my mindset played a significant role in the progression of the symptoms.

Medication

Betablockers:I was put on betablockers right after my first diagnosis. The first agent my doctors prescribed was Bisoprolol, two years later they tried Nebivolol. I never felt that they have been a benefit – the opposite was true: While taking blockers my afib episodes got worse. I recognized the progression but I was not sure if there was a link – until I discovered the existence of several types of atrial fibrillation. The way I experience my afib episodes points directly to vagal afib. They begin late in the evening hours or during the night and typically convert back to sinus rhythm between getting up in the morning and noon. I rarely had an episode while being under stress – relaxing on the couch is a much bigger risk. Keeping that in mind and knowing that betablockers intensify your vagal state I wanted to get off the blockers. It took me three attempts to get rid of them totally. After gradually reducing them the first and second time my SVT got worse – so I started taking them again. The third attempt finally was a success. Today, after being off for more than four months, I am doing better. This may not be a scientific proof since I made several changes and adjustments to my life, but anyway: I am convinced that in my case Betablockers made my condition worse and that they pushed the progression of my atrial fibrillation. Betablockers seem to help somewhat to reduce the number of ectopic beats and the number of SVT episodes. They also may reduce the maximum number of beats while being in SVT or atrial fibrillation. For me they didn’t pay off.

Flecainide: This could be the magic pill to sort all my rhythm problems out. The doctors I trust told me to give it a try. To make a long story short: I didn’t follow them so far. I don’t like taking pills in general. Possible side effects of rhythm medication in general and Flecainide in particular are potential dangerous pro-arrhythmic effects. I know that these effects typically don’t occur in patients like me but I spent years to feel safe while experiencing rhythm disturbances. When I take a drug that intervenes in the electrical system of my heart I can’t be sure anymore that the sensations I experience are benign. It’s a mental barrier that holds me back. There may come the day for me to try Flecainide – it’s my “next line of defence”. I won’t force it – for sure…;-)

Ablation

I was told to have a structural normal heart and that even a successful ablation won’t prolong my life. Keeping that in mind it’s a discussion about quality of life “only”. Seeing the potential risks of the ablation procedures, the unknown long-term consequences and the need for multiple procedures in many cases I didn’t opt for ablation so far. I may have to re-evaluate this decision later in time.

Progression

In the beginning, when I had atrial fibrillation just once in some months, my biggest fear was: “What if my afib becomes worse or permanent?”. The idea to be in permanent fibrillation was hard to accept and even having several episodes per week was unimaginable. Well, within three years I found myself facing exactly this condition. My afib progressed to three times a week and it typically lasted between 6 and 14 hours. Interestingly I dealt better with it the more I experienced it. I got used to have many episodes somehow. When I suffer these episodes I tolerate them better the longer they last.

I remember my longest episode – it converted back to sinus after 24 hours. At the end of this episode I felt better than usual – I really got used to the condition and I got a rough idea about how it can be possible to live in permanent atrial fibrillation. I still don’t like the idea, but since that day I’m a little bit more relaxed. I think it’s possible to get used it.

These days the nature of afib-episodes seems to change. My episodes don’t last that long anymore. I still have to deal with ectopic beats and I still experience days with many of them and really wild patterns. But all-up I am doing much better than the years before. SVT episodes are still part of my life but they also occur less often.

Supplements

Magnesium: Magnesium seems to be the #1 supplement for the “arrhythmic community”. You can’t do any research about ectopic beats, SVT or atrial fibrillation without being recommended to try magnesium. I took magnesium for a longer period – up to 500 mg/day. It wasn’t a game changer for me. I think it’s beneficial when you are magnesium deficient and I still take 250mg/day just to prevent deficiency.

Potassium: My potassium blood levels are typically in the middle of the normal range. I tried a combination of potassium and magnesium for some time with no effects.

Omega-3: I also tried Omega-3 tablets for some time with no effects.

Vitamin D: I have been diagnosed with a severe Vitamin D deficiency (less than 10 ng/ml). Four months of supplementation had no significant effect on the arrhythmias but contributed definitely to a better general well-being.

Diet and lifestyle

Weight control is my personal enemy. I have a strong tendency to gain weight and the only way I lose weight is if I manage to maintain a really strict diet and regular sports. There are studies pointing out that losing weight could play a significant role in reducing or even eliminating episodes of atrial fibrillation. That’s my future mission.

Alcohol: Before I had to face heart rhythm disturbances I was used to drink alcohol on a daily basis. A bottle of wine or some bottles of beer was a part of my daily evening routine – on the weekends often more. I stopped drinking alcohol completely around three years ago with the result that I never had to deal with reflux again. For me alcohol became a trigger for ectopic beats. Even small amounts of wine or beer will bring them on. It’s a signal for me to stay on track…;-)

Heavy meals: Eating too much is definitely a trigger for ectopic beats. A bloated stomach and carbonated drinks can bring them on. I try to avoid big portions as far as possible.

Vegetarian diet: I have been on a vegetarian diet for 9 months with no effects (for the arrhythmias).

Sports: A real game changer! Slow jogging for around 30 minutes can make me feel better for the rest of the day. The fast heartbeat after running makes it harder for ectopic beats to fall in. But it’s not so easy to perform when you fear your heart rhythm disturbances. In the first years I completely stopped running or doing any other sport when I felt a single ectopic beat. Nowadays I typically keep on as long as I feel somehow well.

I stopped competing in team sports due to the unpredictable nature of my SVTs. When I experience a SVT episode I need a short break to perform deep breathing to stop it. Until now I am not able to stop them while going on doing sports. Even if my team mates accept my condition I do not want to be the “weak part” of the team. I am constantly working on dealing with my SVT episodes and controlling them. Once I am able to master them without having to stop what I am doing I will come back to join my team. Till this day I will try to increase the weekly number of workouts/runs.

Meditation: I found meditation to be very beneficial – especially when I had to fight with stress and anxiety. I can really recommend the headspace app (www.headspace.com) – an easy and guided way that helps to establish and maintain a daily routine. To meditate helped me a lot, I still do it when the going gets tough. Meditating on a regular basis has enriched my life in many ways. I

Self education

Gaining knowledge about your health problems is very important – especially when you have to deal with heart rhythm disturbances. They can cause extreme anxiety, simply due to the fact that the heart is such a central organ. Furthermore there is still a lot of research going on and many GPs really don’t know how to deal best with your symptoms.

I have met many Doctors and some of them weren’t really informed about arrhythmic conditions. Some told me that each and every afib patient needs to be on blood thinners. Other cardiologists haven’t even distinguished between vagal and adrenergic afib – in consequence they prescribed Betablockers for vagal afib. Checking for potassium levels, vitamin status, magnesium doesn’t seem to be part of the standard procedure. I had to do the research on my own.

Gaining knowledge was a game changer for me. It helped me to sort my thoughts while being in arrhythmia and to significantly reduce my anxiety regarding afib and SVT. But this was a long way. It’s not so easy to find quality information and many online resources provide wrong or misleading information.

Google: To google symptoms is not a good idea in general. When you already suffer from anxiety this is a save way to make it worse. When you google for heart rhythm disturbances you will be linked directly to stories about stroke or cardiac arrest. In the beginning this was a real challenge for me and Google was no help at all. I am sure that the way I grabbed for information made my symptoms worse.

Sanjay Gupta/York Cardiology: Dr. Sanjay Guptas Website (drsanjayguptacardiologist.com), Youtube-Channel (https://www.youtube.com/user/YorkCardiology) and Facebook Pageare by far some of the best resources for patients that suffer from cardiological problems. I found no other place on the web with so much detailed information provided for free. Well sorted, well researched, jargon-free speech and a nearly perfect symbiosis of holistic approach and conventional cardiology. I consulted Dr. Gupta several times – each and every session helped me to get real step forward. Dr. Gupta is definitely the perfect role model for the caring and encouraging Doctor every Patient would like to consult. Having met him was a milestone in my patient history.

Lessons learned

Having to deal with all these conditions has put my life into a mess for a long time. I lost a lot of quality of life and I still have to fight to get back.

But anyway: I was able to find some deeper sense in my situation. My condition helped me to modify my lifestyle and to get rid of some bad habits. I still have to manage daily challenges, but I am sure, that I am back in the game. I was able to overcome most of my heart related anxiety and I am curious to find out, what the future will bring.

If I don’t succeed in coping with my symptoms on the long run I will definitely consider taking Flecainide and/or the ablation procedures. As I get older I will also need to have an eye on my CHA2DS2-VASc-Score.

Overall I don’t try too hard to force things because I learned that this will cause even more tension. I simply try to do the best I can and to take things as lightly as possible. Whatever comes may come – as long as my heart keeps on dancing I will be ok.

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7 Comments

  1. Jancy Robbins-Jones 18th September 2018 at 8:07 am - Reply

    Well worth reading. Thanks for that. Something many of us suffer in fear.

  2. Marina D'Alessandri 18th September 2018 at 8:32 am - Reply

    I relate to this experience so much. I love the way ‘B’ notes there are days you can feel your heart is restless. The fear factor too, especially in the beginning, working out that it exacerbates the problem is often more than half the battle.
    Thank you for sharing.

  3. Tisure Badenock 18th September 2018 at 4:24 pm - Reply

    This has given me some hope. Thank you !! I have been suffering for over 16 years with heart palpation. I did EKG, Ecogram, Stress test, Halter monitor all came back fine just showing etopic beats, now for the past 3 weeks every day I have been having skipped beats that fallow with a racing that goes up to 130 beats some time the come every few seconds. I went to the ER 3 times in the past 2 weeks they did an EKG and it showed normal I do not know what to do what could cause a skipped beat followed by racing. Can your test results change over the years? and how often should you have these tests done?

  4. Nicola 30th August 2019 at 9:02 pm - Reply

    OMG this literally is the best personal account I have ever read. This is me completely but at the very early stages where I don’t see the days I will be able to lead a normal life! I am really upset by it all as i feel it is taking away my enjoyment of my beautiful 3 year old daughter when I run of biginemy starts mid night time story and I can’t concentrate. My stomach is definitely linked and anxiety is a massive thing for me: it’s so hard to break the anxiety/pvc cycle. Many thanks for this insightful and reassuring post.

  5. Mel 13th October 2019 at 9:52 pm - Reply

    Very interesting and a well written read. I’m 41 now and started with SVT’s and (AVNRT) at 16 but i was told it was anxiety. Diagnosis finally occurred at 20 when it was caught on a monitor in A&E at 220 bpm. I have regular ectopics and have ‘irritable’ heart days where it’s jumping around trying to cause trouble. Anxiety has been a huge factor in my life from a very early age, well before any heart issues. I’m on citalopram for that and Bisoprolol for the heart. Bisoprolol changed my life, i went from being in the hospital almost every week to having 1 or 2 established episodes in the last 8 years. I say established because these are episodes that typically last 30 mins to an hour, at other times I get the odd hop skip and jump but it never comes to anything because of the beta blockers. I completely sympathise with how it has affected your life. Just when I thought my anxiety couldn’t be worse I developed arrhythmia I was convinced I would die from. 25 years later I’m still here, still anxious but I’m working on that.

  6. Francene 14th October 2019 at 1:44 pm - Reply

    This is a great article, thank you! It really mirrors my experience and B has articulated the physical and mental aspects so well. I was so pleased to hear that Headspace worked well for him . . . I have the app but haven’t really started using it. I also had vagal afib that I think may have progressed because of the beta blockers. A few months ago I had an ablation after trying all the alternatives I could come up with (acupuncture, yoga, swimming, no alcohol, magnesium etc.). It was a pretty big deal . . . 7 hours under anesthesia and some issues with bradycardia and inflammation right after . . . but at this point my heart is feeling strong and steady. Hoping it lasts. And much appreciation to Dr. Gupta for helping us all through this!

  7. Iwan 14th July 2020 at 3:48 pm - Reply

    This sounds just like my story apart from I’ve always been a very keen runner and cyclist. Started get SVT at 40 after a bout of flu which was about the time swine flu was doing the rounds. I don’t get afib but sometimes think it could be and not Svt. My GP wanted me to go on beta blocker but I have a resting heart rate of 40 from being fit and beta blockers even the smallest dose makes me feel bad, so only take to help stop a long episode, but I’m 50 now and just about excepted them. Really reassuring to read your story

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