There is no consistency with ectopics

[Jenny M]

I have had ectopics, palpitations, missed beats, flutters and everything in between for over 30 years. I am also a registered nurse and thought I ought to know how to deal with them. At first they ruined my life because I could not deal with the disruptive invasive nature of the thing, together with the fact that no one took me seriously and I went through some horrendous experiences whilst trying to deal with the psychological damage this was doing to me. Mine is a very long story and I wish that there had been a medium like this when I first started having them, it would have helped me so much. I became isolated and depressed. I couldn't work or deal with people and I had anger outbursts which were truly spectacular and eventually after months of no help I became exhausted and suicidal. In the end my partner went to my GP and asked him to please find someone who could help and he did. Found this wonderful consultant cardiologist who said that if he could not find some medication to help me then he would invent one! I spent three months in hospital and it took me two years to really get a handle on it but one of the things I found with my meticulous record keeping was that there is often no rhyme or reason why ectopics come when they do. I used to write down every incident, every episode, everything I was doing at the time. It became a bit of an obsession, so much so that the cardiologist told me "I don't want to see you writing anything else down on that piece of paper". But my vast experience has shown that you cannot tell when they are going to do what they do or when they are not. I have been through some awful awful stressful experiences and had none and then another time, no problems getting on with my life, all's right with the world and then they come. I could write so much on this, it's sort of opened a pressurized can but I had better keep it short to start with. Needless to say the reason I found this site is because after years of having some sort of control I have just had 6 days of the b......s for no apparent reason so while I was ranting and raging I thought I'd just type in "ectopics" to see what came up and here I am!

[keepemlaughing]

Welcome! You will find lots of support and encouragement here!

[debera]

hi jenny welcome to nmp. i also suffer with ectopics missed beats and flutters. and i agree with you they can happen any time. i have had times like you when having alot of stress i didnt even have one ectopic. then when i seem to be relaxed then the ectopics happen.there have been times when they have just ruined my life, afraid to do anything in case they happen again. so i know what you are going through
love debera:hugs: :hugs:

[Coni]

Hi Jenny and welcome to NMP. I also suffer from ectopics and agree there is no pattern to them...mines had been fairly settled for a while but this week they are back with a vengeance. I have had all sorts of test including a 24 ecg which showed benign ventricular ectopics...that was almost a relief as it proved I wasnt imagining it. Sometimes I find I can deal withem fine, other times they do freak me out....though i dont think they scare me quite as much as when they started (I was 18, now almost 41 lol). I havent had any treatment apart from trying propranolol which I couldnt tolerate. My cardiologist said if they get so bad I feel I need meds then they will look at alternatives for me, but for now I think I'll try and do without. Like you I am a nurse, which for me can be a bad thing because I tend to overanalyse things and am constantly looking for reasons and causes, but I am trying to overcome this.

Im sure you'll find this site a great source of help and support.

Coni XXX

[Cathy V]

Hi there and welcome to nmp, and yes im another member of the ectopics club! First time i felt them i was 22, im 55 now. They've had a hold over me all of these years, and still do to an extent but after joining nmp im finally learning to live with them. But still get odd times when i think the worst.

Ive lost count of the tests ive had over the years. Even since moving over here to germany last summer, ive had one 24hr monitor and a visit to the cardiologist, to satisfy my new doc that all was ok....and it was, so ive been given another year to worry about them :D

Catch you later
Cathy xxx :welcome:

[Dazza]

Hi Jenny,

Glad that you found this sight. It's such a great source of info, advice and support. :hugs:

[Jenny M]

Thanks everyone for your replies and support. When I first got these things I decided to start a support group but then I changed my mind because when I didn't have them I didn't want to be reminded of them! I thought I was one of a very very few people who were "sensitized" to this condition. In other words, really feel the presence. Over the years I have taken many patients pulses and loads of them had really awful arrhythmias and were totally unaware of it. Lucky them! This week with a return of them for now eight days instead of the usual every couple of days has been hard but I gritted my teeth and carried on walking my dog briskly and carried on with my 30 mins of low impact aerobic exercises whereas once upon a time I would have been too frightened. I talk to it like it is a little person sitting on my shoulder and some of the things I say are not repeatable, I'm sure you all know what I mean.

[Jenny M]

I would just like to send an update of something strange that has happened to me. Last June, the regular and extremely intrusive arrythmia that I have had for 32 years just stopped! How it happened.....I have taken regular medication (Fleccainide 100-150mg) daily for all that time. I tried many many times to get myself off the drugs but the arrythmia was so bad there was no way, it was bad even with the drugs! One day I forgot to take my medication and I forgot right until the next day because nothing had happened to remind me. I went through the next day and I thought "I'll just see how long I can go" and that was it really. I emailed my consultant and within one hour he had emailed me back...yes I know that's good but we've known each other a long time....He says yes this is something that sometimes happens, no one knows why and the bad news, it may return! The only changes that have taken place that could have affected it are that two months before, I was put on Verapamil, which is a blood pressure lowering drug and known to be good for arrythmia, but it hadn't affected anything for two months.....and I was also put on stronger PPI (Protein Pump Inhibitor for excessive stomach acid) and stomach acid is a known irritation of an arrythmia. So, it's anyone's guess what's going on. I do get the occasional ectopics and flutters but only occasionally and I just don't get all hung up about it. I hope it doesn't come back I am so enjoying a normal life!

[mandyclare]

Hi Jenny

It was really useful reading your story in brief, especially with you being a nurse. You absolutely summed up how it is in a nutshell. I hope you get lots of support here and I am sure your threads will also help others feel less alone.

All the best
Mand x

[kestral]

after a couple of days when things seemed to have settled down, i felt a strange wobble in the chest and get about 4 beats in very quick succession before settling down again and all the old anxiety and doubt is back in a big way. ive read all sorts of things and spoken to the gp who ran tests before telling me i have these things but its nothing for concern, but i cant get the lid on the anxiety.

[Jenny M]

I am just writing an update. I have been put on Verapamil permanently now for my blood pressure but it has had a great effect on my ectopics, fantastic. Still get them but much less. I also have been brave enough to go to the Gym regularly, for the last eighteen months. I have been working very very hard and have been able to do it without a problem. I just wanted to say that incase there were other people like I used to be, afraid of doing a lot of physical stuff. I can only hope that the workouts, one and a half hours at least 5 times a week, are doing my heart good. I am much fitter than I ever was so it is possible to work out and survive. Now saying that........!!??