Ectopic heart beats taking over :(

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HI all,

I'm a 25 year old 6ft 15st male I've suffered with Ectopic heart beats for about 4 years now, I've had 24 hour 48 hour and 7 day ECGS  and told everything is normal and it's just ectopics it just feels awful when they happen. Lately it has just taken over I've lost my job because of all my sick days, I have a one year old son who I'm struggling to provide for its all just going down hill.  I'd really like to talk to someone who has ectopic beats to see how they feel and if they feel the same I do. Or anyone who knows a way to settle them down I'm 25 and can't live the normal life all my friends have, I don't drink or smoke and when I do have a drink I will be fine whilst drinking but the next few days after its just ectopic after ectopic. When I was younger I was a heavy cannabis user and even dabbled in some cocaine so I can't help but think I've ruined my own life. For the past 3 years I've been taking 40mg propanalol 3 times a day I was coping ok then I saw a specialist cardiac doctor about 2 weeks ago who told me this wasn't very good for long term and didn't seam very happy my doctor had let me take them for this long so he changed my medication to 1.25 bisoprolol and it feels like it doesn't do anything to help my ectopics. If anyone can relate to this I would love to hear back 

Thanks 

 

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  • Posted

    Hi Jamie. I'm so sorry you are having a hard time. I can totally relate to what you are going through. Having these heart problems at such a young age sucks. The first thing to say is, stop blaming yourself. Thinking you have done this to yourself won't help at all. Chances are you would have had the ectopics with or without. I have never taken drugs (apart from prescribed by docs) and I have all kind of heart thumps and bumps. Blaming yourself won't change anything, I will just make you feel angry, frustrated and generally crap. How often do you get the ectopics? 1.25mg biso is a very low dose. I take 2.5mg twice a day and that is considered a fairly low dose. Speak to your doctor about taking 1.25mg twice a day. I find spreading the doses helps me more. Try and work out your triggers and keep a diary of symptoms. Sometimes you forget good days and just focus on bad. You'll be surprised how many good days you have once you stop concentrating on the bad ones. Keep in touch. 
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    • Posted

      That's a great reply thank you for taking your time to talk to me, I get ectopics sometimes not for a week or so then all of a sudden I'll have 50 plus a day I have an implanted heart rhythm monitor in my chest and the docs have seen my worse days but don't seem concerd one bit. They just tell me I might grow out of it but that never helps how I feel I just want my normal life back I'm 25and I think if I have these now what will they lead to in the future sad thanks again 
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    • Posted

      I totally get what you mean. I worry about what my heart will do next too. When I feel a flutter or pause I instantly freak out or go for my pulse. Then I try and tell myself that it isn't doing anything it hasn't done before and if I have chance to worry, then it can't be THAT serious right?! I have lived with my heart problems for 6 years and it hasn't failed me yet. You have had 4 years and your are still here too smile the doctor might think 50 ectopics a day isn't serious, and you should take comfort in that. However they just don't get the psychological burden! The doctor might not be so flippant if they were having to cope with it!!! Don't give up. Work on getting the meds right and find coping strategies. I have had to find a new 'normal'. Crap things happen to people. That's just life. Uncertainty is a given. I think It helps to realise that life is uncertain for everyone... Not just the ones with dodgy hearts smile 
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    • Posted

      Your so right!!! Thanks for your advise first time I've talked to someone who also suffers with ectopics and it's really put my mind to ease. 

      Thanks 

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  • Posted

    Hi Jamie, I totally sympathise with you. I too am a sufferer. I get them every single day and sometimes most of the day. It can be very frightening and alarming in spite of the fact that the Drs say there is nothing to worry about. You are the one feeling it not them.  I take 5mg of bisopalol, and i still get them. Please stop caffeine completely, no drink at all and no smoking.  If you like liquorice, stop that as  there is an ingredient in that which causes irregular heartbeats, also do not snack between meals. If you get hungry that can also start an episode. Also cut out as much sugar as you can. I have done all these things on advise of a Dr.  I have a loop recorder fitted inside my chest and I carry an activator and also have a home monitor so when you have an episode you can transit it straight through to the pacemaker clinic at the  hospital.  Has your Dr suggested this for you.  If not, then you suggest it. Hope this helps Jamie. Speak anytime. Ann
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    • Posted

      Hi Ann, Im going through the same you are I also have a loop recorder fitted and carry an activator that I can download at home. I've had it in over two years now it's due to be taken out soon with nothing serious caught on it. I cut out caffeine fizzy drinks smoking and alcohol completely nearly 4 years ago still get them, I've been reading online that some people take brisopalol 10mg per day so I'm thinking of calling the doctor to up mine as I'm only on 1.25. Before I was on propanalol and they worked great 40mg 3 times a day they would stop an episode for a couple of hours at least. Then I've seen a specialist and he wasn't happy with me taking it for long period of time. Dose the 5mg brisopalol have any effect for you? How long have you sufferd with ectopics?? Speak soon.

      Thanks for replying 

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    • Posted

      I have been on Bisopralol for over 2 years 5mg but still get them. They are loathe to up the dose to 10mg  as it slows the heart down (another problem) so I don't know what to do.  Have they ever offered you the ablasion where they burn the extra tissue away. I was offered that quite a few years ago but declined it as I know people who went through that and it never worked.  I have suffered for 6 years now.  I also read that magnesium is good for chemical imbalance. It occupies your mind 24/7 doesn't it?

      Speak soon

      Ann

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    • Posted

      Do you get them worse if you don't take bisoprolol? I really think I was coping better on propanalol. I've never been offerd ablasion I don't really know anything about that procedure I'd like to know more if you do? I've spoke to my doctor today and I've been moved onto 5mg per day can't see it making a lot of difference though. I think this is just going to be my life now and it's really depressing sad speak soon.
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  • Posted

    Hi Jamie. I have posted on here a year or so ago. I have had these for coming up 30 years now. I have been taking propranolol since 1997. I was up to 320mg per day. It was only when I was in hospital last December for a minor op that they said my heartbeat was a bit slow and to see my doctor because I was on the highest dose. I have halved my dose this year and I don't get many then they come back with a vengeance. No one has told me I shouldn't have been taking this medication for so long and will mention it when I next go. If I don't take it my heart races as well as the ectopic beats. I have had ecg halters on this year and had about 300 in a day maybe more. They said everything was fine?  I am having loads as I type. I'm not so stressed with them as I was. My life went on hold before with them. I just think well 30 years down the line I'm still here. Just!   Sue. 
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    • Posted

      Hi sue, Sorry to hear how long you have sufferd with these for only people that get it realise how uncomfortable they really are it's easy for the doctor to say there normal!  But it's good you can contol them when I have a bad patch I think there going to kill me but they haven't yet so........ Doctor says many people grow out of them but I'm yet to meet someone that has. 30 years is a long time to suffer with them can I ask at what age did you start suffering with them? Have they got worse of better over the years? And dose the propanalol work for you? Be great to hear back

      jamie

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    • Posted

      Hi Jamie. They started when I was going to sleep when I was 8 mths pregnant with my son. I was 24 nearly 25. Had them ever since. Have had ecg's, heart monitors etc over the years but sometimes my heart didn't do it when I was wired up. Then got home and it started again. They said it was stress to start with. But now it's just part and parcel of my life. I had them one after the other Saturday evening till Sunday morning. Then not too bad yesterday,  now today they are back one after the other. They are hard to ignore but every one I have still scares me but I cope with them better than I did. Have taken myself to A&E several times they scared me that much years ago but nothing showed up. I would say in general they are better but get episodes where they are doing it all the time. I sympathise with you because they are scarey but I just try and get on and ignore them. But it's hard. Sue. 
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    • Posted

      Hi jamie. I mentioned I have all sorts of thumps and bumps.... I started having very fast tachycardia in 2008. Eventually they got it on an ECG and confirmed I had SVT (an extra pathway basically). My HR would jumpy to 230bpm and stay like that for up to an hour or so. I had an ablation in 2011 which seemed to stop the long runs of tachycardia but left me with some strange symptoms. I got lots more ectopics and I got these wierd pauses when I shouted or held my breath. There was no extra beat, just a pause. Like me HR slowed down drastically for a couple of beats then went back to normal. Over the next few months I noticed the ectopics more and I started getting short runs of tachy (nowhere near as long as before). One day I was out riding a horse when it happened. I couldn't get it to go back to normal so got really scared as I was out on a road on the horse. I got off and knelt down (still holding the horse) and eventually it went back to normal. It was at this point I decided I would have another ablation. I had my last ablation in November 2013. The doctor found 5 areas I atrial tachycardia as well as my old pathway which had come back a bit. He said he had only ever seen this is a handful of patient in the past decade. This made me feel pretty worried! After the ablation the pauses I mentioned before came back with a vengeance. They ruined my life to the point that I didn't think I could carry on. Eventually and with the help of a drug called ivavbradine my symptoms started improving. I still get far more ectopics than I ever used to have and sometimes have a string of them together but they always stop on their own. My brother used to have ectopics all the time every third beat. He had an ablation for them and his have gone now. However his were all the time so they coul see where they were coming from in the procedure. Any questions about ablation feel free to ask. Sarah 
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    • Posted

      You do very well to ignore them I've tried and failed a lot at ignoring them everybody I've spoke to seems to be in the same boat with these I just wish the doctors could understand how it makes people feel. Thanks for your reassurance and advise it's good to talk to other people about this, I got through good and bad stages it's just a shame this is a bad stage just leading up to Christmas sad it's going to be a hard one this year.

      all the best 

      Jamie 

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    • Posted

      I was thinking of suggesting ablation to my doctor but if it made this any worse I don't know what I'd do. Great to hear about your brother I only heard about ablation a few months ago is it something the doctors would consider for an ectopic heartbeat? I just want my old life back like a normal person and I'd be willing to try pretty much anything! Docs have uped my biso to 5mg per day I took it around 10am haven't had an ectopic yet but that doesn't mean anything as you will know. Do you know of any other treatments or medications I could suggest to my doctor before I suggest ablation as I'd be really worried it made things worse. 

      Thanks again 

      jamie 

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    • Posted

      Hi Jamie.  It's not that I ignore them I just try not to let them worry me. Even though they do. I even stopped smoking  and drinking over 25 years ago because that seemed to make them worse. I could do with one sometimes! You are the age I was when mine started and I felt like giving up. I got so depressed because of them. I shut my people out because I was so scared. No one can imagine the fear you feel having these. Take care. Sue.
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    • Posted

      Hi Sarah,

      I have been dx with Inappropriate Sinus Tachycardia, I get bout of indigestion and then my heart starts racing...I also feel the pauses which are very scary..I started taking ivabradine which I feel has helped some I have been taking it for 3 weeks now but I have still had some scary tachy episodes...how long did it take for u to see a difference? And how many mg are u taking a day? Any advice would help...thanks

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