I am plagued with ectopic heartbeats and have lapsed int...

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I am plagued with ectopic heartbeats and have lapsed into AF upon many occasions. I am only early 40s and these irregular beats have ruined my life. I have a rare illness antiphospholipid syndrome, which as a blood clotting disorder is clearly partly responsible.

My biggest problem is that the runs of ectopics always have one thing in common when they manifest themselves - there is always severe gastrointestinal activity just prior to the attack and it precipitates the ectopics so much, I get runs of 5 ectopics for every one beat, which makes me feel faint and sick.

I take Bisoprolol in a very low dose 1.25mg, as I develop bradycardia with higher doses.It helps to keep the heart rate under control but does not really supress the ectopic beats.

I am convinced that the ectopics are brought on by sphincter incompetence and gullet spasm, and severe flatulence(if I "bring up" loads of wind, the ectopics ease greatly or vanish for the day) Nobody even my GP can definitely confirm a correlation between the severe GI disturbances and the ectopics.I would welcome a paper on this subject which I could read or to know if others share this same set of symptoms.I feel if I can prove the link, I will be taken more seriously and maybe even be halfway to finding a solution.

I lost my job three years ago and have never worked since, largely due to MS type symptoms I suffer with my illness but the added ectopics and AF attacks make everything far worse.I would quite literally try anything non invasive to alter my life to something reasonable again !! I have kept a diary and have proved that my ectopics are provoked by GI problems but I can't find anything on the web that confirms this .Reassurance would be so helpful !

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  • Posted

    I can sympathise with your problem. I developed ectopics and PVCs many years ago, and they subsided for a while. However, when I was on holiday about three years ago they returned and I have been plagued with them since. I am convinced that they are triggered by stomach activity, but all of the medical people I have seen say that there is no connection. They are wrong. I have experienced a particularly bad weekend, including some ectopics yesterday, that was followed a few seconds later with numbness in my head. That scared the living daylights out of me. I went straight to the docs, but of course by then everything was back to normal. Despite being told that these episodes are benign, I find it difficult to rest my mind.

    The night before last I woke up in the middle of the night, and my stomach was churning with some flatulence present. A few minutes later the ectopics started. So, I say to the medical people how come there is no relation between the two, I think it's time you had a rethink. There are so many people who post on internet message boards who think the same. Are we all wrong?

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  • Posted

    I have experienced ectopic heartbeats for many years now and I am only 24 years old. I have seen many cardiologists and have been placed on 24-48 hour heart moniters along with having many echo's.

    I started with very bad symptoms again approximately 1 1/2 years ago and I would experience runs of ectopics that would scare me to death. I would have 40-50 repeated ectopics with no normal beat in between.

    I did notice this time around that I experienced a grumbling feeling in my stomach when experiencing ectopics. I would drink milk and try to release wind in order to make myself better.

    Finally I was persuaded to go back to hospital and see another specialist. He advised that I was suffering from Ectopia, a severe form of ectopic heartbeats, however, was once again like so many times before, told that these beats were benign. It seems very hard to beleive when you are going through such a traumatic time. I did tell the doctor of the relationship between this grumbling and growling sound in my stomach but no attention was paid to this.

    I sympathise with you both in relation to this condition and do agree that there must be some causal link between the heart symptoms and stomach and digestions problems.

    One way that I found eased my symptoms was to lie down on my front and hold the front of my body up by resting my elbows on the floor. This does help and sometimes takes the ectopics out of the runs.

    This is a very frightning condition to have and for me and I imagine for you also it is taken too much for granted by the medical world.

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  • Posted

    hi i am a 35 year old female also got the same problem! ectopic after ectopic beat! fast heart rate, although been told they are normal and stress dont help! but i have also noticed i get them around my period time, with a very bad grumbling and growling noise and acid in my stomach, i also was thinking maybe there is a connection with the 2 of them???? how they think people can live with these i do not know! its made me not wanna do anything for fear of these start when i am out! i got them when im walking and resting so i cant win... but like i said maybe there is a connection with periods and tummy problems! any suggestions for my problem i would love to hear from you, urs kerrie

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  • Posted

    Hi

    I am 26 year old female and have been experiencing problems with my heart since I was about 19/20 years old. It started off with the occasional annoying palpitation but when I turned 21 I was rushed to hospital due to the arrythmias i was having. I have numerous ectopic beats which occur as singles, bigeminy and tri-gemini's aswell as have experience a fast heart rate and then a slow heart rate and i have episodes of 1st and 2nd degreee heart block - i cant tell you how many 24/48 hour tapes I have had done over the last 5 years!!. I had a EPS study last year and was due to get radio frequency ablation at the same time, due to the cardiologists thinking I suffered SVT's because of an extra pathway but this proved to not be the case so I could not have the ablation done. I am so frustrated and depressed. I have been on every arrythmia drug known, without any success - i felt worse on them or got other side effects. I spent all of september and most of october 2005 in hospital and eventually got told I had a totally different condition from what was originally thought - i have something called \"pacemaker syndrome\" which you should only get if you have a pacemaker - I dont have a pacemaker. It is that unusual that the electrophysiologist/cardiologist I see is in Glasgow, which is more than 200miles from where i live!!! I feel constantly tired beyond belief and sleep alot...i believe i have a definite connection between my heart playing up when i am pre-menstrual or have a upset stomach - but like yourselves this connection has not been listened to so far...i persisted with my local cardiologist about my hormones and got to see a gynaecologist and am currently getting this looked at. I have had to give up my job and university and feel so guilty that my 8 year old son has to live with this condition also - it is very debilitating and is so annoying when doctors tell you its something you just have to live with - I would really appreciate any response to this e-mail - i am relieved to read that i am not alone but it is so hard to find people who understand what you are experiencing.

    If anyone would like to reply please do at - ****

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    • Posted

      I had svt and ablation done 15years ago all well up untill about 5taers ago. Like to hill walk etc and started to feel sickly when I started excerting myself more.Over the last few years this has developed into not being able to do anything.Lots of ectopics and a feeling rotten quite a lot of the time. I to have been quoted (in the past ) as possibly having pacemaker syndrome and the symptoms do fit.I live near Glasgow and see a lovely Dr at Inverclyde but I am not sure if we are getting any closer to what is going on now.Meds work for a short while but the arrythmias or what ever come back.I am 51 and my GP thinks i am fine "for my age" Have asked about hormones but consultant does not think they are  a factor.It is so frustrating as know one seems to appreciate how awful you feel.Do you think your cardiologist in Glasgow is helping? would love to know.

      keep going

       

  • Posted

    Hi I gave the wrong email address when i spoke about my condition (number 4). It is ****

    Hope to hear from someone with their experiences and thoughts.

    kind regards

    kathleen

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  • Posted

    Hi all,

    Some and/or all of the above rings pretty true for me, although I am not nearly as far along the track as most of you in regards to the symptoms and length of time with them.

    I am a 40 yr old male with a history of major operation that do not relate to either the heart or stomach. I had acute ulcerative colitis and had my entire large intestine removed. Related or not I am not able to absorb iron into my system through the small intestine. This results in me being very tired all the time. I have seen my local GP (whom I trust) who is aware of my issues.

    I also note that my sister-in-law who used to work as a medical insurance underwriter said that symptoms of low iron is "heart palpitation".

    I presented to my GP maybe a year ago stating that I was having "pains" in my chest and we went through some tests including "stress test" (hook me up and make me walk hard on the tread mill). It showed nothing. He suggested that I may have "gullet spasm". Nothing more really happened so I left it at that. That is not until recently. Over the last 3 -4 months I have noticed an increase in the number and severity of the "palpitations" I am experiencing and noted the last time I went to the GP (different locum), my BP was above normal. I currently find that my pulse is higher than normal - I know I am not fit, but around 90 at rest I don't believe is good.

    I am going to my GP this afternoon to state the following case more fully. Either I have gullet spasm or I think I'm on my way to a major heart attack - well that's the way it feels.

    I'll let you know what we come up with.

    Andrew

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  • Posted

    Thank you all so much for your replies. It helps so much to know that I am not alone with these symptoms but so frustrating for us all not to be able to pin point the cause & obtain treatment.

    I have had very severe ectopics for the last 3 days - definitely period related this time as well as food & wind.

    I ate 2 slices of toast on Wed (brown wholemeal & healthy) and about a half hour later, nearly collapsed with triplet ectopic beats.There was that much wind, I could not believe it. Eventually I was all cried out with wind and they eased to a lesser number for Thursday and Friday - only to return today, Saturday worse than ever.I also felt dizzy and can identify with the lady who said her head felt funny.Mine felt as if there was heavy pressure on the top & my balance was very poor.I also had chest discomfort & pain in my back. It did clear but it was scary right in the middle of the ectopics.

    Today, they came on suddenly after drinking a cup of tea. It was decaff tea, which I always drink.I took my beta blocker in the middle of the attack and there was a slight ease, only to return again !I have them right now I am becoming scared to eat at all !

    Night -time, I agree with everyone is a bad time. I avoid going to bed for as long as poss.I know that the minute I lie down, they start again. Gurgling starts in the stomach,wind rises and ectopic after ectopic begins.My GP told me to try proton pump inhibitors to try and reduce the acid in my stomach. I have tried lansoprazole and sometimes they do help a little - othertimes they provoke even more wind, as they are not designed to counteract wind - just acid.I have eased off of them as I do think they might be making it all worse.

    I am to have a barium meal in the next 2 mths to see if my gullet is spasming. I think it is & this spasm is knocking the heartbeats out.The medics won't believe me - Comments from my GP "Oh, I get ectopics - they are very common. You should ignore them !!!!!" also a quote from a recently seen specialist " Oh, all the best people get those lol lol !! I am not really worried about those in this symptom list I am writing down. They don't bear a relationship to eating"

    Where on earth do you go from here with that sort of attitude !!??

    I am going to try the squatting position that was mentioned in one of the replies - thankyou - I do something similar so I will certainly give that a try.It would be great if it worked.My best regards to everyone & I will keep viewing the pages. I am sorry for the delay in this second posting but I have not been well as you can imagine ! Very best wishes Jenni

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  • Posted

    Hi there

    I am a 31 year old male who has had atrial ectopics really badly since November last year. They just started for no reason! I get Atrial Fibrillation (AF) after vomiting but there is no other interesting medical history. I am in good shape. It took 3 visits to A & E (I was getting feint and dizzy with a really bad run) before someone realised that I wasn't getting the 1 or 2 that "Normal People" get. "The best thing to do is go away and forget about them" I was always told. Grrrrrrrrrrrrrr BUT I work for the NHS (I'm a microbiologist) so thought I would try and pester the lovely nurses on the cardiac ward and their help has been terrific. They put me in touch with the Cardiology Doc's and one in particular (who sorts me out when I get AF) has been really useful. I started having 2.5 mg Bisoprolol daily which, for two months completely rid me of the ectopics but gradually they wormed their miserable way back in and they kept upping the dose of Bisoprolol which made my pulse get slower and slower (not that great as I really enjoy exercise) and felt completely lethargic.

    Tried Disopyramide as well but not really making much difference. I am actually booked to have ablation therapy to stop my AF from happening which, apparently, will stop the Ectopics as well as the extra conduction pathways originate from the pulmonary veins which get fried in the ablation procedure. Fingers crossed.

    Really hard exercise stops them only while I am exercising. Apparently ectopics either come on while resting/eating or exercise. I get the resting/eating ones which are from vagal stimulation. Therefore when I hammer it on the bike I am ectopic free.

    Completely fed up with it all; got a 3 year old son and wife who is a nurse = busy life but I just can't resist a feel of that pulse. boom boomboom boom boomBOOM. There it goes again!!!!!

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  • Posted

    I too have had palpitations/ectopic beats since March 2005 and this happened when I got sunburned in Kenya - which I am sure there was a link. I eventually found a heart specialist who specialises in the rythm of the heart and he suggested betablockers. I did not want to take these as we have been trying for a baby for over two years so I had the catheter ablation in April 2006 - I had to be so persistent about having it done. It was quite scary as it took 3 hours and they don;t put you to sleep but it was worthwile. The consultant could only ablate the ectopic beats in teh upper heart chambers and I don;t experience it from there anymore however I am continuiing to get ones from the bottom chamber so I have to consider whether to have this done in the future. Unfortunately the ones from the bottom chamber have longer gaps inbetween each heartbeat which he said is quite normal. Depending on the type of arythmia you have it may be worthwile considering catheter ablation. I have had really bad episodes like you all too and still get them, it is the most frightening experience and I also found the doctors/consultants really don;t understand how it physically makes one feel with the symptoms of dizziness, shortness of breath etc. I also find it worsens nearer my period and would suggest hormones play a big part because women who become pregnant sometimes start getting palpitations - and pregnant women's hormones are higher. I am fed up with it too as it interferes while I am at work or socially. Another thing to be careful about is at concerts ! I went to see the Blue Man Group recently in London and as soon as the Drums started my heart started jumping all over the place !! I know a few people at work with a similar condition and the same happened to them. I thought I was going to pass out. It is very upsetting and I find that I can;t do exercise or even sit in the sun anymore as it starts them off. Good luck with you all, I really hope it sorts itself out.

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  • Posted

    i get etopics and i definetly agree it is gut related as i suffer from ulcerative colitis, and when this is flaring up and is overreacting it is causing me to have etopic beats it as though i have drank vast amounts of caffine although i have cut all this out, i think it could be drug related in many cases and stress, as this produces adrenerline which i think causes the etopics, adrenerlline causes pressure elsewhere and everything speeds up. i think it may also come on when people are tired, and the body is wornn out

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  • Posted

    Terrific to find this site. It would be redundant to say I have had all of the symptoms related to all of the causes (such as gastrointestinal and stress) others have described. I sometimes get paired or tripled beats in a series. I am told this is called bigeminy and trigeminy (sp?). I am a professor of medicine of the eye, and am disappointed that cardiology and general practioners often dismiss what they do not understand in the largess of their knowledge, and do not explain potential causes of that which is to them harmles, even though a cause of anxiety top the patient.

    I also find that treadmill monitors are "reset" through these missed or extra beats. So I might be running with a steady heartrate of 140 that suddenly dips to 65 on the monitor. I don't believe it is acutally 65, but the monitor is messed up by the irregularity. Is this familiar to anyone else?

    I hope I am getting into this wonderful discussion group? I am in the United States (Connecticut).

    Thnaks for any response you may give.

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  • Posted

    In response to Jenni above - I took lansoprazole for acid reflux and got terrible wind (and dizziness) from them. I switched to omeprazole (another proton pump inhibitor) and the wind has gone away so it may be worth trying a different drug.

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  • Posted

    hi i know how you feel i get bigeminy and it can last for 5 to 6 hours plus it is so difficultto deal with it makes me very tired breathless and very much unable to do anything when it eventually subsides for an hour or two and i only get occasional runs it is absolute bliss you feel as if your so alone and no one around you understands what your going through its very difficult to deal with the doctors say not to worry but it is so traumatic you do worry i am currently awaiting results of echo so fingers crossed nothing serious shows this site is great for reasurance that you are not alone with this as at its extreme it is very distressing take care andchin up your not alone kimsmile

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  • Posted

    I myself am a 27 year old female who has experienced ectopy since I was 12-13 years old. Like you all I have had a nightmare with the symptoms experienced and have definitely felt worse with them as I have become older. I experienced larger runs of ectopics, sometimes all night one after the other with no break which have obvious implications with feeling dizzy. When I was approximately 14 years old I was rushed to hospital with a tachychardia when my heart went to 240 beat per minute. Ever since I have experienced problems in my left arm and the latter two fingers on my left hand, they usually fill with pins and needles and then go numb when ectopics are present. I have seen so many cardiologists I can no longer count and because of their attitude to this condition I decided for many years I would not return to see another one and would try to cope with what was happening. As a result of this I suppose I find a heartbeat where triplets of ectopics happen normal for me but still so devastating because it impacts so much on your life, a concept that many doctors don't seem to understand or in fact don't want to understand. I myself approximately 6 years ago started to suffer from gastric problems. My stomach literally felt like it had a hole in it as when I developed a gurgle/growling noise I could push my stomach out and it would sound like there was a leak of fluid. My family was perplexed by this and of course like so many of you these problems also lead to runs of ectopics. If I wake up with a run of ectopics in the night then I usually have wind that must be released and then the ectopics will go from a run into something a little better so I can rest a little. It has caused me many sleepless and restless nights. It is so frustrating when Doctors and specialists can't advise anything for you and are so flippant about the matter, I for one think it is totally unacceptable. I am now a trainee lawyer and have seen many specialists speak in such a way over the years that could potentially see them legally liable for their actions. Like many of you here state they are dismissive of the ectopics let alone that stomach problems and the ectopics can be linked. The last specialist I went to see stated that it was ''nothing to worry about''. My Mum actually attended this meeting with me and said at the time that the whole family were so concerned about the stomach problem I was experiencing and the heart problem too. He then looked at my Mum and said to her '' well maybe you and her family are stressing her out about the problem'' It was at this point and after many years of coping with Doctors who don't understand the situation that I terminated the meeting and I am now in the process of trying to establish why Doctors are so flippant in this area, taking action specifically in relation to the specialist mentioned above. I will of course keep you all posted of what I find out but I do feel the only way to resolve this is by possibly seeking private health care. This is not an option for many out there however if any answers are given this way then the information can be posted on open forums such as this one and may aid others in pinpointing the actual problem.

    It is certainly a relief to know so many others are having similar experiences with related stomach and heart problems. I feel for you all and know first hand how much they can impact on your life.

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