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Ectopic heart beats taking over :(

Posted , 41 users are following.

Jamie88
Jamie88

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 

 

0 likes, 63 replies

63 Replies

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  • ann35714
    ann35714 Jamie88

    Posted

    Hi Jamie

    Somebody has mentioned to me about a breath easy programme from a guy callled Stewart in Australia.  I googled this and found that he started a breathing propgramme after having them himself and that it works but of course you have to pay for it.  I need more time to investiage this one.

    Ann

  • sarah87793
    sarah87793 Jamie88

    Posted

    Hi Jamie. Yes they can do ablation for ectopics but they need to be pretty much all the time as if you don't have any during he procedure they can't see where they are coming from. Try not I focus on getting 'back' to normal. To be honest you never will. Even if you never had another ectopic, the way you think has changed. You never used to think about your heart and now you do. You will probably always be aware of what your heart is doing. As hard as it is, you need to create a new you. Don't allow yourself to be beaten by it. You will cope and you'll probably be a better than you were before because you will be so much stronger. Everyone has something to cope with in life. If you are anything like me it's the fear my heart gives me that I'm frightened of, but I am working on that wink 
  • caroline68835
    caroline68835 Jamie88

    Posted

    Hi jamie

    i too have had lots of ectopics. Previously I had an ablation and this eradicated them. I am now suffering with pericarditis and this seems to have started them all off again. It's ok when they come in ones or twos but when they come in clusters this really does take your breath away. Ask to see a specialist who deals purely in heart rhythms. Their is a london cardiovascular centre that is private if you have medical insurance or some spare cash to get yourself assessed. 

    • Pam143
      Pam143 caroline68835

      Posted

      I am getting lots of ectopics whilst taking propanolol for episodes of tachycardia.  Would say 20 or so per hour.  As you say, it is scary.  Not sure whether I need more propanolol or less, as I only got occasional ectopics before I started taking this drug.  Any thoughts?  I am on 40mg per day.  Also, can you please give us the name of this private cardio clinic?  Would like to investigate a private appointment.  Many thanks,
    • caroline68835
      caroline68835 Pam143

      Posted

      Hi pam. I'm going to the london cardio vascular clinic in Harley street. Since I've had the pericarditis I've been having ectopics. These have subsided somewhat as it was three weeks ago that I had the pericarditis diagnosis and my last ectopics were on Thursday last week.  My gp wants me to take propananol for the anxiety that I have been left with due to all,this trauma but I'm terrified that this will increase the ectopics again. What do you think? I also have lots of indigestion at present. Do yiu get this? I hope that when the indigestion subsides the chest pain will reduce. 
    • Pam143
      Pam143 caroline68835

      Posted

      Hello Caroline!

      Amazingly, my ectopic beats have all but disappeared today.  I have no idea why!  I have been told that I may be taking too much propanolol, for me, and that the ectopic beats are a result of that.  However, I am newly on this drug so have not yet got used to how much I need and the side effects.  It seems very individual.  I do think propanolol will help your anxiety, from my reaction to it and the comments of others on this site taking it for anxiety, just be careful with the dose and make a note of your reactions each day, that will help your GP adjust the dose to one that is right for you.

      As far as indegestion goes, i don't have that at all but do feel there is a gastric connection.  When i have a lot of ectopics, I tend to have a bloated feeling.  Don't know if I should link the two, it may just be a side effect of the propanolol.

      Sorry not to be of more help, good luck with the propanolol and I hope for improving health for you!

      Pam

    • ann35714
      ann35714 Pam143

      Posted

      Hello Pam,

      I too feel there is a gastric connection.  My ectopics get worse if I feel bloated or hungry. I get them every day.  I am on Bisopralol but they don't seem to be easing them.  I have been advised to cut down on sugar/  Mine started after having bouts of tachycardia for several years.

      Ann

  • mark1504
    mark1504 Jamie88

    Posted

    Hi Jamie. I wanted to know how you are getting on now? I have only recently started with these and await my 24 hour monitor. They are very scarey. Laid awake now having one every other minute. I hate it and wish i could control the anxiety and panic they cause. Let me know how your coping. Hope your well.
    • Jamie88
      Jamie88 mark1504

      Posted

      Hi mark sorry for the late reply I just haven't been on here and I'm great now! I'd like to know how you are getting on? And if I can help you the way I've helped myself get over this awful condition. Maybe you can direct message me your email if you wana chat I don't use this a lot but will check it over the next couple of days.

  • rea666
    rea666 Jamie88

    Posted

    Jamie I feel so much like you- I may as well be in a wheelchair ( said without offending anyone i hope), ive never smoked or drank but I get them without warning and I shake and cry after. If im bonest I wouldn't wish this on the devil himself its that bloody horrible, im terrified. I wNt to play with my kids, run, shop, have a normal life but I cant. Im afraid of Mr Death who seems to be sat on my back all day. I never go out and all I think about s when the next attack is coming. We are meant to be moving to Ibiza next year but Im terrified of having an attack on the plane - omg imagine that! Im always in a&e but its 38 miles away and sometimes ive been that scared iv slept in the ambulance bay. Im on Bisoprolol l but it doesnt stop the big attacks. Twice ive had 4hours of a beat over 180 bpm and it wS the most hottif thing ever. I was terrified but they sent me home - again. Been offered flecanaide but i heard that can stop yourheart just like that so what the hell do we do?!! Gps seem to take my visits with an exasperated view which p's me off- im afraid, alone and have no life at all . I wish for all of us there was a permanent cuand safe cure. What sort of life have we got with all this fear and rushing for our pulses and having this all day.... So sad. Im crying for us all as I write this as icant think of anything more mentally and physically crippling ... Bless you all 🌹🌹
    • joane9220
      joane9220 rea666

      Posted

      It's terrible to feel that way!  Are those SVT episodes?  I hope you can find a doctor who can sit with you and talk about what is happening and offer some solutions.  It is very scary.....but try not to let them take over...  I'm also on Bisoprolol and it seems to help for now.  What dose are you taking? 
    • donald61613
      donald61613 rea666

      Posted

      Hi,

      can totally identify with what you're saying in your reply to Jamie88. I wrote a reply to him yesterday (I see your own reply to him was a while back) so you might have a peek at this if you're still in discussions mode.

      Best regards 

      Donald 

  • ann35714
    ann35714 Jamie88

    Posted

    I too suffer ectopic beats and am on Bisopralol and am now on 5mg which has eased them. I was on 1.2mg but I was getting them all through the day. . It is so frightening as you say. I am also taking Magnesium and that seems to ease it a bit. I am convinced it is linked with gastric problems as well, as I get a lot of indegestion and then it really starts. I have a loop recorder which catches the beats and is transmitted straight into the hospital so they can see what the beats are doing. Have you spoke to your cardiologist about getting this. It has eased my anxiety knowing that it can all be traced.  
  • k3rivers
    k3rivers Jamie88

    Posted

    Hi Jamie,

    You will get through this just like the rest of us ectopic sufferers do.  It is not because of any recreational drugs you took in the past as most of us innocently have these and did nothing to deserve them.  You will lead as normal of a life as you wish to..........promise.  I have them daily and have learned to ignore and with life style changes, you will do great.  We are all here for you.  Keep in touch.  BTW  I have not heard of any drug that really helps so I do great without any!  Go natural. Love to read the posts of any of these that may help.  Sincerely someone just like you.

  • donald61613
    donald61613 Jamie88

    Posted

    Hi Jamie,

    My sympathies - I've suffered from ectopics since 1973 (!!!) and will never get used to them. Years of remission on and off inevitably came to an end and back they have come. I utterly detest them. On an anxiety theory I've tried counselling, hypnoses CDs, magnesium gel, diet supplements .... you name it. Nothing has helped. I also have occasional runs of atrial tachycardia.

    Had a catheter ablation for AF in 2001 but they didn't cure the ectopics. Awaiting the outcome of a 5-day monitor which I wore a couple of weeks ago. I see that a few UK hospitals  undertake abation procedures for ectopics so I'm not through with my search for a solution. Age is not on my side, however - I'm 76 in December.

    A big problem with me is the way I react to them. I don't have an avalanche of these very often but they occur, singly and completely at random, and this triggers an anxiety response which has become so acute that I am prepetually on edge, waiting for the 'next one'. I often wake up in the morning feeling like c..p and the anxiety (stomach and chest tightening, etc) reappears on cue, as I prepare to struggle through another day. The nature of these one-off occurrences has changed with my level of fear - they now feel like mini-elecric shocks, a sensation I find hard to put into words. If I could only access some means of coping with these, or enabling me to ignore them rather than their becoming a focus of my life, I'd cheerfully settle for that.

    Ectopics ruin concentration, and life in general. I hate them so much for the way they have limited life's enjoyments. The rotten thing of course is that, although they are as debilitating in their own way as many other more visible afflictions, they're all inside of us and attract little comment or sympathy. Often wonder if I did anything to deserve this. It's moderately comforting to know that there are so many sufferers out there with similar symptoms. 

    Good wishes,

    Donald

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