Ectopic Heartbeats

[UTFT9]

Hi everyone,

I first experienced heart palpitations 8 years ago and went through the whole process of contacting the GP having numerous heart monitors etc - my GP and other health professionals went as far as to push the narrative that my palpitations where due to aniexty and my GP even diagnosed me with 'Generalised Anxiety Disorder' but I wasn't convinced...

Fast forward to mid 2021 my palpitations had changed to what I could only discribe as my heart noticeably skipping a beat which absolutely scared the life out of me. Over the past 3 years changing from Propranolol to Bisoprolol and fighting with the GP to send me to another cardiologist because I didn't believe aniexty was the reason for the palpitations... I have now been given the diagnosis of Ventricular and Superventricular ectopics.

I have had a very traumatic experience battling with my GP and 2 cardiologists before finally seeing a cardiologist (the 3rd) who shown a real desire to help and explain and after his referral to another cardiologist who specialised in ectopic heartbeats I was given my diagnosis and also given advice on how to try and deal with them, I was even taken off medication.

Even though I have been told my ectopics are not dangerous and my burden is reasonably low the actual sensation of having an ectopic beat is still as unsettling now as it was 3 years ago when I experienced my first one.

I am currently in a prolonged period of having episodes of ectopics since around 6pm on Friday and the mental impact is just as unsettling as the actual physical impact of feeling them. My weekend has been ruined unfortunately by them because I am exhausted and in a very low mood because of them.

My partner is VERY supportive but it's difficult explaining things to someone who doesn't experience them.

Does anyone else have an issue with arrhythmia of this nature?

Thank you.

[JenWro]

Hello UTFT9.

I was in a similar situation. Cardiologist and doctors were not interested and then I had an incident at work which occupational health got involved. This was the catalyst for change. I was working for a company where health was important and not to be taken lightly. I was sent to doctors during COViD with a request for another echoscan. I got one and everything went in hold. Nothing from anyone, then I received ill health retirement from work without my doctors involvement.

I found out two years later I had an ectopic heartbeat and cardiovascular problem since birth. Had to be taken into AE and referred to the cardiologist for an appointment. Then I was taken into AE and had to stay that’s when it was taken serious.

I am currently in the journey of readjusting, I was taken out of yoga classes that I had attended for over 10 years, lost friends and a lot if activity based hobbies. The anxiety was horrendous, frightened to sleep and not supported at all

I’m on verapamil now I take small steps to learn about the problem, joined a supportive keep fit class, I was already caffeine free. I am older than you, but please do live your life, easier said than done I know, but I kept a journal everyday and my blood pressure readings and show my doctor and nurse I even take it will me to hospital if my heartbeat drops to 38 so all the information is there for all the questions

That’s it That’s what I have done to find my rythms. I hope this helps. Lots if love to you and yours ❤️

[UTFT9 in reply to JenWro]

Thank you for the reply, I can totally relate to the anxiety part you mention because when I first experienced the ectopics it completely put my life into a spin. I have worked so hard to accept them for what they are but still at times they get the better of me (this weekend being one of those times) keeping a journal of symptoms seems like a good idea I may well start that.

Thanks again.

[UTFT9]

Thank you for your reply, yeah I have been averaging about 5,000 a day the past few days, it just takes it out of me and I feel exhausted. I am trying my best to continue a normal life as such and I do know its a big effort to shift the mentality around the ectopics but it's not an easy process.

[Behappy63 in reply to UTFT9]

This forum has really helped reassure me. It is disturbing and no one can really truly understand unless they have it too. When I’m fine I’m fine when I’m not I can’t sleep and stress like mad. But. It’s been happening now more regularly ( since feb/mar). I bought an Apple Watch and I’m obsessed with how long I sleep. The quality what my heart does and how much o2 I have. There is loads of data some helpful others not so much. The thing about the o2 is regularly while asleep the o2 level drops to low 80s. And I do wonder if this is triggering the ectopic beats. I was also diagnosed with very low folate and I’m now 5 weeks into a three month prescription. What I had been experiencing has very much improved but it’s still happening through the night. No real reason I can see. Anyway wanted to say thanks to all and also say to those struggling- you are not alone. I try and say to myself this will pass and keep optimistic that it will 😀

[UTFT9 in reply to Behappy63]

Thank you for the reply, I know what you mean about becoming obsessed because at first I use to literally sit there with my fingers on my pulse making sure I still had a decent enough heart rate which probably made things worse for me. its not nice at all is it!

[John3333333 in reply to UTFT9]

I also suffer from ectopic beats, although not as many as 5000 per day. Single ectopics or couplets don't bother me too much, but triplets and salvoes do. Can I ask if you experience several ectopics in-a-row? The most I have is about 5 or 6 ectopics in-a-row. It really stops me in my tracks. Although it is not commonly prescribed, flecainide significantly reduces my ectopic burden - from about 500 per day to 50. If I didn't experience the frustrating ectopic runs once or twice a day, I would be very happy.

[UTFT9 in reply to John3333333]

Thanks for the reply, I have had them clustered together a good few times which have been recorded once as an 11 beat run of SVT. They aren't pleasant at all!

[Siame]

Hi, my cardiologist is very relaxed about changing my dose of bisoprolol. I had an ablation for AF. However I still have occasional tachycardia and ectopic. I adjust my bisoprolol accordingly.

I would ask if your cardiologist is an electrophysiologist, they IMO are the ones to ask.

I was also taking fleicanide, but have now stopped this, but can take again if I need to.

Christopher

[UTFT9 in reply to Siame]

Thank you for your reply, yes my last cardiologist was an electrophysiologist and he actually advised me to come off bisoprolol after discussions in my last appointment.

[Siame in reply to UTFT9]

I wish I could help you more

[Jewelgirl]

hi, I too have ectopic heartbeats, atrial and ventricular. Cardiologist says it’s nothing to worry about but like you I experience the debilitating symptoms which are horrible. Mine started properly over the last 12 months and before that I had just a couple of episodes since about 2023. I’ve had ECG monitors and an echocardiogram all coming back normal. My cardiologist says I have to live with this or I could take a mild beta blocker but he advised against it due to side effects.

It’s really affecting my quality of life as they are so unpredictable and mine make me feel exhausted, on edge and short of breath, I struggle to even get up my stairs when they start. They last for about 24hrs and I have no idea if anything is triggering them. I’ve invested in an Apple Watch to see if I can pinpoint anything that might suggest a trigger.

It’s depressing to think that I’m going to have to live with this and it’s affecting my professional life too. I’m 60 this year.

I’m sorry you’re struggling too but you’re not alone.