Palpitations - ruining my life

I'm a 33 year old female and have been experiencing ectopic heartbeats every day for the last 2 years. I have had all the tests done except an echo of which I am on the waiting list for. Lots of ectopics were picked up on my 24 hr tape. The consultant said that I just have to live with them. I am trying to but am worried that I may also have more a more sinister arrhythmia than what has been recorded durIng that period. I have flutters that feel different to the ectopic beats. I like to run and am worried that I may go into sudden cardiac arrest. Plus I feel very guilty because I went on a crash diet a few years ago and perhaps the problems are due to an electrolyte imbalance at this time. If anyone has a similar experience I'd love to hear from you. They are ruining my life and.every night I have to go to sleep feeling my irregular heart beat. It is so distracting and worrying.

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  • Hello!

    I have had ectopic beats in periods and they are very frightening. I feel worse after any exercise, it is like my body revenges to me for putting a strain on it. Some bodies simply are like that and you maybe need to run less. :(

    Last time I ended up in AE with a very rapid heart beat which I couldn't stop. When they run tests, my potassium levels were under the norm. Sodium close to be under the norm. Now when I feel extra beats, I take a elecrtolyte drink (small packages from the pharmacy) and I feel it helps. I also have a b blocker to take for episodes like that. Is your pulse very fast during the episodes?

    Do you sweat a lot? You loose elecrtolytes while sweating, also kidney problems can destroy that balance. And some bodies are very sensitive to electrolyte imbalance. Your heart USG will tell you very little. It is like a car - one system fro motor, another for electrisity. You have a electrical problem, signal problem, not the plumbing of the heart.

    I hope this helps, best of luck.

  • Thank you for this. I usually get the palpitations at rest. My heart beat doesn't go particularly fast but the rhythm is irregular - like skipped beats. Then at times it will flutter for a few seconds. I don't sweat a lot but perhaps will pay more attention to ensuring that my electrolytes don't go too low. Thank you

  • Good luck. I also forgot to mention that you should use only the best quality salt like Celtic salt which you can buy on Amazon. And use it a bit more than usually just to try if that helps. I also feel my heart more when lying down, I have started with higher pillows now.

  • It is difficult to give advice as there seem to be as many arrhythmias as there are stars in the sky. However, there are therapies which can make a big difference. Drugs can help a lot and there is a procedure called ablation, which severs the faulty nerve connections in the heart and although not a failsafe solution, for many people it can be a big help. I have had three ablation procedures and although my AF is pretty well sorted, I have been having ectopic episodes, which I also find uncomfortable and debilitating whilst they last. I also take a twice daily dose of Flecainide Acetate, which I have been taking for nearly 20 years. Since the ectopic episodes became a problem about two years ago, my consultant increased my dose from 2 x 50mg tablets to 2 x 100mg tablets, one each in the morning and before bed and this seems to have almost eliminated the problem. If I experience an ectopic event, I take an opportunity extra 100mg tablet and this seems to settle it down within half an hour. I am a lot older than you, but I exercise at the gym three times a week, hike and walk instead of taking the car whenever possible, so my condition does not stop me dong anything.

    My suggestion to you is to talk to your GP and request a second opinion with another cardiac consultant arrhythmia specialist. I don't know where you live, but if it is within reasonable reach of Harefield, Middx. I would recommend seeing someone there. It is a national centre of excellence for heart medicine. If you are too far away from there, I know there are many other first class centres around the country to visit for equally good care.

    I hope this helps, but remember, your ectopics or AF may not be the same as mine, so you may require a different solution, but just telling you to live with this, without offering any possible interventions seems very strange.

  • Thank you very much for your reply. It is helpful to know that you continue to exercise. I saw my doctor again today and he said heard a murmur when he listened to my heart today. He has arranged for me to repeat the 24 hour holter and will try to speed up the echo test. The cardiologist I saw said that at the moment he thinks my condition isn't serious enough for a pacemaker and beta blockers are not advised because I want to start a family. Thank you - I live in Ireland so there is no specialist heart centre that I know of.

  • Hi Claire,

    I have the same daily frequent extra beats. Last year I had 3 months of this constant , day and night ( I don't exaggerate here - I mean constant, on a Holter this was every second beat) and thought it was the end. However, after every test possible I found a Consultant at Wythenshaw Heart Unit , who didn't mess about and told me straight. I have an electrical wiring problem which is as significant as hiccups in medical terms, I wont kill me. There is nothing they can do for me other than take B BLOCKS but they have limited effect for me anyway. I have learnt to ignore most of it and trust me if you can do the same your life becomes your own again. By ignoring it I can actually make the frequency much less- I cant explain that but its a fact. The other factor , which was advised by my Consultant , is to "exercise the hell out of it " and this does work. Compared with other illnesses its nothing but to us its all consuming and we focus and dwell on the issue. You have to learn to deal with it because it isn't likely to go away in the short term. A bit of tough love but I hope it helps you.

  • Thank you very much for your reply - it is very helpful. You are absolutely right - they are all consuming. I saw my general doctor again today and he is going to repeat the 24 hr holter monitor again and try to speed up waiting time for the echo. I understand what you went through - i have had episodes of hours of ectopics every other beat day after day. But yes I have to remind myself that there are people with serious heart conditions who still get on with life and people with debilitating diseases who have a much more positive outlook than what i have. My poor husband has to bear my daily update of my heartbeat rhythm. I will try to begin 2017 with a more optimistic approach to them. Thank you

  • Hi Claire, after several years of being told my ectopic bests were benign, they worsened and were brought on also by exercise. I understand you won't want to try meds yet but when the irregulars are too difficult to tolerate, there will be a medication that helps. Beta blockers didn't help me; I'm on flecainide acetate, by the time I was in my early 40s, post having children I really had no choice. I have found it helpful being on this site; for so many years I didn't know anyone who experienced this and if can be frightening and isolating and when I do have a bad day, I know I appear distracted and distant but knowing that this is more common than you thought might help. Gill

  • Hi I have only just joined this page and already find it such a relief that there are others out there coping with the same thing! I was diagnosed with ectopic beats and occasional irregular episodes and like you basically told to learn to live with it!!

    It can be extremely frightening and I went through a period of not wanting to go out on my own as it made me feel so vulnerable!! I don't think you ever get used to it - sorry.

  • I completely understand. I sometimes worry about being left on my own in the house but I remind myself that I have had them for two years and have managed to live a normal life despite the constant worrying. It is very hard for others to understand what they feel like. To have peace of mind I will continue to get them checked out periodically for as long as I experience them. Although I am awaiting another 2 tests.

  • I read your post with interest,. This time last year I was having constant ectopics for an eight week period. They drove me mad, I didn't know what to do with myself. I couldn't sleep, sitting down made it worse. I had a stress test done which flagged up a few ecropics but it was after this that it got considerably worse. My appointment for having the holster came too late as the episode ended the week before! The hospital discharged me as they couldn't detect anything, therefore their interest disappeared. I continued to have episodes for a few months for anything up to two weeks at a time. I thought I was going insane. Then it all stopped. Now, what you say about the crash diet rang a bell as the year before I embarked on the 5:2 diet and lost 1.5 stones very quickly, in fact my stomach shrank so much I was hardly eating on the five days either so am wondering if this may have triggered the problem. I still get the odd bout of palpitations but that is all (touch wood), but nothing like as bad as last year and my diet has evened out more although I'm still doing the 5:2 periodically.

    All the best. 🙂

  • Thank you for replying. Im worried that I have done long term damage to my heart. I was exercising 5 days a week and not eating enough. I lost about 9 pounds. I experienced a lot of brain fog for a few months and then when this disappeared the ectopic beats began. Although my blood tests did not show up any deficiencies except for being slightly anemic. My iron levels are always on the low side.

    The ectopic beats drive me insane and I don't know if I will ever get rid of them. At times they are worse than others. My main concern is that they will develop into something more sinister or have already but aren't yet diagnosed.

  • I have been diagnosed with atrial arrhythmias which I experience daily and I hate. I also get a lot of runs of ectopics which I hate just as much. I get sick of doctors telling me the ectopics are harmless yet they fuss around my SVT and AF... I find ectopics just as horrid as true arrhythmias. So I do empathise with you. As for the crash diet you did, put it in the past. It is over and you can't change it. But you can learn from it and chose not to do it again. I did things in the past like binge drink as a student and smoke... Did this cause my heart probs? Who knows! But dwelling on it ain't gonna help me so I can just chose not to do these things again. Crash diets and serious limiting of food are dangerous for the electrics of the heart but if you are not doing any of that stuff now then just be kind to yourself and don't be hard on yourself. We have enough to deal with with blooming dicky tickers without worrying about other stuff! Best wishes and cyber hugs :) xxx

  • Hi Viny,

    Thank you very much for your reply. Your words are very kind and reassuring. Yes you're right - it is what it is. I hate the ectopics and haven't yet been diagnosed with other arrhythmias. I yearn for the days when I didn't don't have them or was oblivious to them. I hope you are coping ok with yours. Thanks again for such a nice message.

  • Hi Claire. I have exactly the same. They started off with the usual pause and then 'boom' but have more recently turned into longer irregular flutters/patterns that happen at any time of day, anywhere and scare the he'll out of me. I had several tests previously including an ablation to try to find and solve the problem but my cardiologist couldn't find anything. This was 3 years ago and my beats feel stronger and different now. I used to do lots of exercise but now feel scared to do so. My New Year resolution is to try to get back into exercise.

  • Hi Elliot, it is frustrating but reassuring that the cardiologist didn't find anything wrong.

    I absolutely relate to everything you mentioned although I have not had an ablation. Everyday I wonder when they are going to start but they are usually worse in the evenings.

    I do plan to continue running but I'm not going to run further than 10k. Any doctor that I've spoken to about this has told me to keep running. However I always do worry before the start of a race. I never push myself too hard though.

    I would recommend that you return to exercising because it'll likely be good for your overall mental well being.

    Thank you for replying to my post because I find a lot of reassurance in knowing that I'm not alone. I wish you all the best in your return to exercise.

  • Hey there,

    I'm so glad I found this thread as I felt like the only person going through this right now. I have always had the odd palpitation, but over the last year they have become so much worse. To the extent that I never expect to wake up in the morning, when I finally fall to sleep. To say they drive me insane is an under statement and it's all well and good the medical staff saying just live with them, but it's not them feeling your head violently vibrating with your heart beating for hours on end..it's exhausting especially as mine come at rest especially when it's bed time. I am having an echo on Monday and I am going to try beta blockers but I don't have much hope of them working😢😢 Hoping for a miracle 💔

  • Hi Shellie,

    I totally understand the feeling of fearing going to bed. When I wake up in the morning I am thankful that I made it through the night. I had a bad case of them today after eating a 3 course meal.

    Like you, mine are always worse when I'm sitting or lying down. I used to love watching films and box sets but lately I can't sit down to watch them as I know the ectopics will start.

    It is great that you are having an echo, I hope all goes well for you.

  • It is very interesting reading all the responses to your initial post, Claire. I have been told that AF becomes more common as we all reach old age, to a point where more that 50% of us will have some form AF when we reach the age of 80. So this is a common problem, although how common in younger people I don't know. AF is also a large collection of conditions, all a bit different, so there is no 'one size fits all' solution.

    Nevertheless, I am surprised that so many respondents here have been told that nothing can be done and they must just live with their conditions. There are procedures that can be done, like pulmonary vein ablation and there are medications available, like Flecainide Acetate and Metropolol, which can help with the symptoms. Maybe the doctors saying that some people have to live with their symptoms, offering no help, are correct, but I would ask for a second opinion. I know exactly how unpleasant an AF or ectopic episode can be and I would not just accept the situation without exhausting the possibility of some help. We are all entitled to ask for a second opinion.

  • I had an ablation just over a year ago and until recently have been feleling great. the last few days though have been having ectopic beats. Very frustrating and lots of help on here. Think a trip to dr may be in order though.

  • I used to go to bed every night and check my pulse hoping to get a regular rhythm.

    Whenever I did, I'd check again and again and invariably would later experience a palpitation to blow my hopes apart. I became obsessive and, of course, had problems getting to sleep.

    Now, I have permanent AF with the rate controlled and never worry about the rhythm. Don't even bother to check it as I know what it will tell me. It's just how my heart is now and I get on fine with a normal active life. AF is not a killer and will not cause cardiac arrest though I fully understand your concern. It's the biggest worry we all have initially with this condition. Mine has been mis-behaving for 11 years now and I push my heart very hard with physical exercise.

  • Hi there,

    I am like you in that my fingers are almost glued to my neck. Any chance I get I'm checking my pulse. Sometimes I count to ten in some sort of OCD behaviour to see if any irregular rhythms occur in that time. I'm a teacher and I'm sure my students have already picked up on this behaviour. I don't know if I have AF yet but I'm glad that you are coping with yours and being comfortable with exercise.

  • Thank you to everyone who has replied to my post. I have gained a lot of comfort from your comments. It is very reassuring to know that I'm not alone. These palpitations still scare the hell out of me and drive me insane but I'm going to persevere to live as normally as possible. With two more tests coming up I hope to find out more information as to how I can manage them. I will say that I am completely obsessed with them. I feel some dull pains in my chest as well and I wonder if I'm imagining them or if they also indicate something more sinister? I could talk/write about them all day. Sometimes I could cry about them all day. But they have been a part of my life for two years now!

  • How are you feeling now Claire?

  • Hi John,

    Well compared to a year and a half ago when my ectopics were at their worst, they have significantly decreased. I used to get them constantly from 5pm onwards (unusual they seemed to start in the evening). Now, of course I do still get episodes of them. What I do still get everyday once or twice is a flip flop or flutter for a few seconds. I really hate these. I'm still waiting on the echo, it's a 10 month waiting list. I received the results of my 3rd holter last month. Only 4 ectopics were recorded but at times my heart rate lowered to 48 bpm. I wasn't happy about this but the doctor said all was ok.

    10k season has started again and I've ran two 10ks in the last 2 weeks and I've been ok. I enjoy these but worry that I'll have a heart attack during the race. I'm going to keep running though. I hope I get my echo soon though. Thanks for asking John.

    Regards

    Claire

  • Do you get these flutter sensations after eating a big meal? Considering it's 5pm onwards?

  • Stay positive Claire. Hopefully, you'll get sorted soon. You are young enough to be able to anticipate a positive outcome from appropriate treatment, if considered necessary. Unfortunately, my AF occurred too late in life for ablations or cardio-version to work.

    As I've said before, I now live with this condition but have managed to carry on a normal life with the right medication. It is only on rare occasions that I truly feel the effects of AF and I honestly just do not worry about it now. Getting a cold now gives me greater reason to complain !

  • Without drugs I have constant ectopics. Usually this "just" means that my pulse is weak and hard to detect, all over the place is how nurses describe it when they take it. But I occasionally had episodes that were much more pronounced, and scary!

    There is no way I could ive with them. My EP tried me on various rhythm control drugs, and after a few failed attempts including one that made things slightly worse, we found that Disopyramide worked like a dream. I haven't much at all since then, which is a few years now.

    I often wonder when doctors say you'll have to live with someone, it's something you have to really challenge and dig your heels in. I did that, I wasn;t just offered alternative drugs, I had to be really insistant.

    Hope you get a solution as I know exactly how it feels.

    Koll

  • My daughter had the same, suffered heart pain, ectopic beats, ended up in A&E several times but they could not find anything wrong. Anyway cutting a long story short after several tests heart scan, she had endoscopy and found she had hiatus henna, she was put on medication for this, now she hardly gets any ectopic only if she gets stressed or a couple of wines.

    Hope all goes well for you.

  • I have same symptoms as you. Mine cleared up for a few months (after starting out of the blue). A very stressful situation has started mine up again and they are bad real bad. All night, all day.

    When I got tape done they only got a couple , which were harmless. I am no waiting on 5 day tape. I agree they are stress related in my case but I cannot control them. Once they start off they continue , stressed or not!

    Can you not ask for 5 day tape and maybe they will catch the flutters?

    Its a horrible thing to have. My sister has same as well and hers started suddenly too. Cardiologist said it isnt family related, just bad luck. Sometimes I think they dont know

    everything about it as they seem rather unconcerned.

    Good Luck.

  • My life has finished. 40 years old n my life has gone. Ive had all the tests but not the treadmill. My words would echo yours so no need to write again. Ive been bedridden 2 yrs, lost 4st and am so miserable ive nothing to live for as all my days are terror of these demons. Its not just one sort- all different. As im so ill with fear they did another holter. No results yet. I cant live like it anymore. We bought our dream place in Spain but i cant go as my partner wont leave his job and im stuck here in such a dark place. I cant go on. Docs wont help. Bbs don't work or give me brachycardia. I dream im running n free.. when i wake up im sobbing as i wake to a nightmare. Ive written my will n planned funeral. HAd 2 afibbish attacks n dr said its gave me ptsd. I refuse to take anti depressants- they all warn u not to take them if h have irregular heartbeats. im scared not depressed n what are they gunna do!! Sorry if this sounds bitter but i am bitter. Angry. Scared with a life i dont want like this snymore. I drive 42 miles to the nearest ED most nights n sit in the car park as im so afraid. Sorry for long post x

  • I am so sorry you feel like this. Have you had an echocardiogram or a 7 day holter? Please persist and ask for more tests as they will help to give u peace of mind. I know exactly how you feel. Every activity I undertake is determined by whether they could bring on heart flutters. I am actually gaining weight because I've stopped my exercise classes. I love running and I want to get back into it again but sometimes have flutters during a run and am scared that my heart will fail during a run. I hope you get some help or peace of mind. Please continue to seek medical help and don't be ashamed to do so. I know it might not give u much comfort but I completely understand what you are going through. I'm 33 and not long married and feel that I can't enjoy this time of my life as much as I should because of the fear these flutters produce. I'm waiting on an echo and then will take things from there. Good luck.

  • Hi Claire, sorry you are suffering so. It is miserable. I have ethics including runs, SVT and possible atrial flutter and will be having an ablation. This has been going on for 7 years and it can take over your mind. Here are a few things I have done that reduce occurrences; cut out caffeine, stay hydrated, given up alcohol, eat smaller portion, take medication for acid reflux. Also I notice that once I get my mind on them they get worse so I distract myself. Carry out relaxation/meditation exercises which you can find on YouTube. Some people take Magnesium as well. It is an utterly irritating condition so I under stand how u feel and stressing about it definitely makes it worse. Take care. Maryl.

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