Calling all heart specialists

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Having found this site, I am quite shocked by how many sufferers there are all suffering with ectopic beats, me included.  A lot of you are very young, unlike me at 70!  It would be great if the heart specialists out there could read the cries for help on this site and maybe offer us some solutions instead of the flippant comments we get in the consulting room ie. "it's just something your heart likes to do", "it's benign", "it's like hiccups", "walk around your garden 3 times" bla bla bla.  Having read many articles in newspapers and magazines on the subject, a lot of them view ectopic beats as abnormal and need investigating - they can cause blood clots to form as blood backs up in the chambers of the heart and could lead to a stroke or heart attack.  So why do our consultants largely dismiss us.  Is it because it is too costly for the NHS to treat us in that offering us an operation is something our doctors could not afford from their budgets?  I am rather cynically suspecting this!

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  • Posted

    I agree im 40 and have suffered for 30 years with this affliction. having had every test under the sun and i keep getting told "its the hearts way of adapting everyone gets then you know they wont kill you!!" well everyone may get the but let me tell you not everyone feels them! i was able to idetify each one on a scan which surprised the radiographer. whilst these things may not kill you mentally they destroy you. I was told by a cordiologist "dont make yourself a cardio cripple" meaning dont not do anythin because of these, which again is easy to say when you think your going to die you dont want to so much as think about raising your heart rate for feat of soparking them off. with exercise they are worse for me as they are more amplified.

    I think that the reason we feel them is someting to do with the posstion of our hearts and stomachs and possibly our vagus nerve. I think when our stomach expands it puts pressure on the vagus nerve in some way which can stimulate the issues. this by the way is a very laymans view and im sure im wrong however i have reached this conclusion from years and years of trying to find or justify a reason for this horrible condtion in my own mind.

    So yes Diana a cure would release many of us from our self inflicted jails.

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    • Posted

      "Self inflicted jail"..What a great term and I agree with all you describe. I think we need to band together like the Cancer society or any other organization and "race for the cure". We're not going to let life pass us by till the right person that is important enough to finally find our cure!
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  • Posted

    Hi, I was diagnosed with ectopic beats last summer and was in hospital for 10 days having lots of tests. I am 68  and I was then diagnosed with  a-fib last October after spending a night in hospital  and put on the new type blood thinner. I had an appointment yesterday at the hospital with a Cardiologist, and after she looked at all my ECG;S  I was told there is no evidence of me having A-fib and I have ectopic beats. This is the same Cardiologist that diagnosed the ectopic beats last year. She wants me to have another 2 heart monitors and another Echocardiogram, and is sending the results to an electrophisiologist who does the Ablation and he will decide if I qualify for the operation. If the new tests come back as Ectopic beats, I was put on a blood thinner for nothing..         
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    • Posted

      Intersting as they thought I had a-fib but after looking really close at the ekg, said my heart was racing so much, they could see the "p" wave and said it was just ectopics with tacchycardia. I am so tired of all of this, and know you are all too.  Let's keep supporting one another.
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    • Posted

      Hi k3rivers, The cardiologist said someone assumed that I had A-fib and she don't think I have. Before I went home she told me she wanted me to have a 12 lead ECG and while I was having this done I heard the nurse say I had Bigeminy and trigeminy not sure what this is. I also told the  Cardiologist about another symptom I get and she said  I could have a problem with the AV node and if that is the case the Ablation would work for me. I still got a long wait for the 2 heart monitors and echocardiogram. Your right when you said we are all tired of this condition, I have had this for over 30 years so hopefully I can have something done at last.    .
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  • Posted

    Hi, I have had ectopic beats for 5 years since 22, they were only caught on ecg last year. The reason mine got so bad was because of the fear of not knowing what they were. Since I have been explained what they are , the have started to dissipate. I rarely get any now. Only if I am really run down and tired. I am athletic any my cardiologist explained how and ectopic beat cannot come whilst excersising which is definatly true..... I feel they are brought on from the mind. Mind over matter. I have managed to lose my ectopic beats so believe they spur from failse signals of stress from our minds...... Thanks
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    • Posted

      Hello young athlete, so kind of you to post.  I think there is alot of truth to the mind over ectopic theory and have spoke to others about this. When I finally found out what it was called when my heart "skipped" beats, it was a "phew" moment. You have a really strong mind if you have gotten them to almost disappear. You give hope to the rest of us.  Keep us posted please. Thanks for sharing.
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    • Posted

      Hi Aidan,

      I wish there was continuity across the board here. I also exercise however I get occasional ectopic a whilst exercising just bigger. My theory is that as the heart is working harder and pushing more blood around so the ectopic is going to feel much more powerful. My Cardio said that was the case and you can get them during exercise, also before and after which I heard is more serious, but the cardio said this was not the case. Confusion all around as one person says one things plan other something else! Makes me scared to exercise.

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    • Posted

      A friend whose wife is just over 60 developed ectopic beats two years ago. She confirms your cardiologists view that ectopic beats do not come when exercising. She has always been a runner and runs three to five miles every day and goes on trekkiing holidays at altitude and vever has them then.
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  • Posted

    Hello again,

    Oh my EP has offered to do another ablation to try to rid the ectopics (1st one did not help) but says this time it will be more dangerous to go near the pulmonary artery etc.,... He also said a 90% cure rate (if it does not kill me). This is in the USA. I am too scared to try it but I bet alot of sufferers would go for it.

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  • Posted

    Hi Aidan.  I was very interested in your comment that you are athletic by nature and the mind over matter and that ectopics dissipate because of this.  Oddly enough, when walking my two dogs this morning I upped the pace I was walking at instead of just ambling (because of the flippin beats) and, hey ho, the ectopics stopped - whoopee!  However, when I got home and made a coffee, off they go again.  It is very hard to put it to the back of your mind and just get on with things - they control your mind and interfere with your day to day activity.  I have started getting cross with mine and thump myself in the upper part of my tummy - that helps!!!!!!
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  • Posted

    Hi Diana, I  have just registered  to this Forum.

    I first discovered I had a heart issue 15 years ago during a routine medical. It seemed to disappear but I have been having fairly regular palpitations for a good number of months now. I am 69, work out 3 times a week and walk a lot. I do not smoke, rarely drink caffeine but enjoy alcohol. The attacks invariably strike when I am at rest and I have a great little app on my phone which records my pulse rate and shows my heart rhythm  in wave form. 

    I find that if I get up and do something I am less aware of the symptoms and they diminish. An " attack" can invariably last over an hour.

    I have just finished a week of tests, 7 day wire, ecg, echo cardio gram which seem to confirm that my heart is sound and that I am suffering from Ectopic beats. 

    Advice is to live with it or use beta blockers which I am not keen to do.

    I previously, before I saw a specialist, stopped caffeine and alcohol for a month but the attacks did not diminish. 

    So for now I will live with it, I will move around when I feel an attack coming on and if I need pills in due course .. so be it. 

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    • Posted

      I have to say that I'm not in any way medically trained. However I took two different types of beta blockers and did not get on with them at all. For me they did not reduce the palps at all just lowered my pulse rate and slowed everything down and caused me to put on weight.

      I stopped them on the advice of the cardio as my pulse dropped to the 30's in my sleep which is too low.

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    • Posted

      The surprising thing is that you will not get ectopic beats when exercising. This has been commented on several times recently on the Forum.
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    • Posted

      They have that effect on me as well. 2.5mg morning and night and the next day my heart rate had dropped from 130's to 34.
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    • Posted

      I have palpitations when I exercise although I was told the same that you shouldn't when your pulse is raised! It seriously concerns me that I do.
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    • Posted

      Have you had a stress ECG or Echocardiogram?

      As I said elsewhere  a friends wife in her early 60's has them and runs three to five miles most days and does mountain treks at altitude. She initially took beta blockers..

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