My ectopic beats are truly degrading my quality of life. Would like to hear about your experiences

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hello everyone

i have been suffering with ectopic beats for almost 6months now, they are honestly the worst thing i could imagine due to their unpredict ability.

My experience is as follows

- i get them around 30 times a day mainly when i am moving outside or laughing hard or when i get anxious as if it occurs when there is a spike inadrenaline or excitement of any form. they give me a sinking feeling in my stomach like when a rollercoaster drops, my heart skips a beat and it feels lik e my heart is about to stop or go erratic and thats when i feel like i am about to die.

- the ectopics can be followed by lightheadedness or my stomach feeling unease as if its moving around in my abdomen

- they tend to not happen when i am staying still or resting such as resting on a sofa

- i also noticed that i get these ectopic beats when i am changing position in bed sometimes

- tachycardia can happen from time to time where my heart rate hovers around 100-120 for a little bit, often i feel breathless or light headed when this happen.

- i sometimes wake up feeling with strong palpitation and elevated resting heart rate around 88-110 for no reason straight up from sleeping. although this doesnt happen often as my ectopic beats

- heavy meals can sometimes trigger them

i have seen a cardiologist and did a ecg monitoring and waiting for those results now. I wanted to hear from your guys, if you suffered something similar or know how to deal with it. i am only 21 and really dont know how i am supposed to cope withthis feeling as i truly feel scared all the time. it has stopped me from taking up an active lifestyle as i am scared it can trigger an erratic heart rate.

i have stopped any caffiene or fizzy drinks and reduced my sugar intakes.

people dont believe how much it has impacted my life when i tell them about and was hopingi could find some people who understand

thank you for reading

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  • Posted

    30 times a day, I understand, but I've had periods where they were 30 times an hour or more, and 24x7.

    My experience has been that the symptoms slowly change over months. I'm also on BP meds, and I added to them arugula for the nitric oxide content - and perhaps that has helped! Beta blockers are one of the BP meds, and they help, too, some.

    So do what you can for overall health and try different things that might help, and maybe one of them will.

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    • Posted

      thank you very much, i hope you get better soon. what are your experiences with betablockers, i have heard they make people feel sick and very tired

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    • Posted

      I've been pretty happy with my beta blocker atenolol - at very small doses! I was prescribed 25mg twice a day, pretty much a minimum dosage (usually it's 50mg once per day). Went home, took the first, and OMG! Heart rhythm seemed locked at like 68bpm whether I was exercising or not. Did not like that at all! So called the doctor, he said it was OK with him if I reduced the dosage. So cut this already tiny pill in half, 12.5mg - ONCE a day. Helps with the heart rhythms and has only minimal side effects - one is it seems to make me dream more vividly.

      And it doesn't seem to go the full 24 hours, either, more like 18, so depending on how I'm feeling and what I'm doing I sometimes take a next one earlier. I'm still way under any kind of normal dosing. I have not wanted to, or needed to, simply gone to the twice a day.

      In fact I've gone off them entirely several times over the last few years. Normally stopping beta blockers can be difficult, but from such a small dose, I don't seem to have had any real problems. If I have no symptoms for several days and my BP is doing well, or even getting on the low side, I've been able to stop for weeks or even months. But, then it comes back ...

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    • Posted

      that sounds great, im glad its going well for you. have they affected your ability to exercise or do intense things considering your heart rate remains on the lower spectrum

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    • Posted

      As long as the dosage stays small the effects are barely noticeable. For a variety of health reasons my exercise is entirely low-intensity but I seem to have pretty good endurance overall, pulse speeds up pretty much normally as appropriate.

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  • Posted

    You will find we understand but consider you fortunate at only 30 times a day. Some people have thousands of ectopic beats a day. They will not kill you but you must beat the stress they are causing you.

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    • Posted

      I mean, one a day can be more than plenty. One a week. Even just one might be enough to send a reasonable person to the doctor. And then it turns out that in a lot of cases it just feels a lot worse than it "really is", and there's nothing simple to be done about them in any case.

      It's very disillusioning to find medicine not as advanced as we could wish for.

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    • Posted

      Stopping caffeine seems to help many people. One person who used to run most mornings never had them then but they started up again after she stopped.

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    • Posted

      I have been in permanent AF for over four years. Previously I had two cardioversions that stopped it but now my atrium is enlarged and I'm told they will not work because of it.

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  • Posted

    I understand how you feel! I also suffer from ectopics (my last holter monitor showed over 8,000 per day) and I also suffer from afib. I do not take medication (I am also quite young). I have found the following things helped me a lot (but I am not a dr, so please check with yours):

    • yoga
    • no coffee
    • no alcohol
    • exercise daily (I am a runner)
    • stopped taking the contraceptive pill (I am female obvs)
    • eating as healthily as possible

    All basic, no magic. Ectopics really do feel terrible, but I am assured they are harmless. even Afib you can live a normal life with (I have been for over 4 years now). Best of luck, try not to worry (easier said than done I know).

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    • Posted

      thank you very much for your comment, appreciate your time. if you dont mind me asking, did you develop afib at later age due to ectopics or was there another reason. i know that afib occurs in 10% of over 70 so its quite uncommon for younger people.

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    • Posted

      They don't know what caused the afib (but both ectopics and afib came on at the same time when I was in my 20s). They think genetics is the cause because everything else is perfectly healthy/normal and I am slim and active. No problem at all - if there's anything else you would like to know, feel free to ask 😃

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  • Posted

    I suddenly started them , wore a holtor for 24 hours and it picked up 9000 in that period . My cardiologist said anything over 5000 in 24 hours and he would medicate. He gave me a beta blocker and a blood pressure medication. I went home and read up on them , decided to take just beta blocker , too strong , felt awful , halved it , took that dose for a while , my ectopics had stopped , but felt tired so halved it again , so talking a 0.25 of a 2.5mg bisoprop tablet and this very small amount is enough , i often forget it . After six months saw cardiologist for check up , no sign of ectopics so he said the small dose was fine . I never took the blood pressure meds because I knew it would go to low , as the beta blockers seem to reduce it too. Just had yearly check , all okay and bp fine too . I felt my ectopics s were bought in by stress, but once you have them they make you stressed , you dont have many , try and relax , have you tried taking magnesium it can help I use the topical because it absorbs easily . Good luck

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    • Posted

      thank you very much for taking the time to write this, im glad things are going well for you. its interesting, do you know what was your resting heart rate prior to the beta blocker and how low it got after it? the doctor is considering giving me a beta blocker.

      its very weird actually because sometimes my resting heart rate hovers around 55-65 at night or at deeep rest and was wondering if one would take beta blockers might they cause haemodynamic instability.

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    • Posted

      I have always had a slow heart rate , and dont really know what it used to be , just that I have been asked in past if I did a lot of sport because it was slow . Now , mainly because I have an apple watch for a year now it records them, my resting heart rate is in 50's and sometimes at night it goes to 39-40 for short periods . I havent had these really low ones for a few months , but at night it is 40's to early 50's at moment .Walking 70's -80's sometimes in 90's or higher . Your beats are already quite slow like me and thats why I halved then quartered the biso tablets . I was given them because they are less likely to cause asthma , you really dont have many , is it a gp giving them to you or a cardiologist? from what mine said your number in 24 hours is tiny . Have you had an echo ? maybe get one and then if okay you maybe less worried .

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    • Posted

      oh, when i said 30 i meant, physically feel impactful ectopics, the actual number of PVC that are non-symptomatic is ofcourse in the thousands

      the cardiologist might prescribe it, i will talk to him about the dosage and possible impact it might have on my ability to concentrate and exercise.

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