Thanks for the replies to my previous post

[dragonsinger]

Thanks for your replies to my first post everyone. Comforting to know I'm not alone in feeling overwhelmed by this, but I'm blown away by how many people are enduring this and find ectopics really debilitating. It's so sad that our feeling are dismissed as unimportant by people who have no idea what it's like to live with this experience. I have other, much more serious, health issues that don't freak me out, so my GP saying I have health anxiety is I load of rubbish. I have ectopic anxiety, which I don't think is unreasonable! I'm avoiding the medication option as I have naturally very low blood pressure and can't risk it dropping any further.

I found the vagal nerve stimulation helpful, and have worked out that bad posture is a trigger, as is my reflux issue. The days when my stomach is playing up the ectopics are much worse.

Keep sharing your thoughts and stay strong. Sending positive thoughts to everyone, especially if your having a bad day x

[BeKind28-]

Hello

I do not have what you have but just wanted to say what a nice post and especially wishing those on here that maybe just reading but struggling positive thoughts that will mean so much as it did to me

I hope you have a good weekend and many positive days to come x

[Kind51]

Hi Dragonsinger,

Have you been given a holter monitor by Cardiology to wear to try to capture these ectopic beats?

The cardiologist advised I needed to wear Holter for longer - a month.

Plenty sleep and not bending down too quickly helps.

[Fanfab1]

I’m waiting for a 24 hr one but I just don’t think it’s long enough!

[Kind51 in reply to Fanfab1]

I agree. My problem was diagnosed after a month of wearing a holter.

[Fanfab1]

hello

What do ectopics feel like?

I get flip flopping sensations and waiting for holter monitor which I’ve had before but didn’t show anything but I didn’t have the flip flopping back then.

👍

[dragonsinger in reply to Fanfab1]

Mine felt like heart skipping a beat, the gap feels like it lasts forever!

[dragonsinger]

I don't even have a Cardiologist!

GP organised a 24hr ECG which showed runs of 8 or 9 ectopic beats in a row. Sadly the test didn't happen until 8 weeks after I reported the 'missed beats', by which time the problem had almost resolved.

The palpitations/missed beats returned about 5 weeks ago, but felt very different to the last time so I went back to GP and I'm currently on the list to have another 24hr test. Sadly that's the issue with any intermittent problem. You seek help when its really bad, but waiting lists mean you don't get the test at the right time. Once again my issue has almost resolved (still feel them every day but noting like the constant flutter/gap/thump that it was before).

I really wish we could have access to these tests when we're having a bad day, and/or that we could have the monitor on for longer so that it would record the fact that there are good days and bad, but not much chance to that.

I also wish that someone would recognise that, although we have been told the issue isn't life threatening, when your in the middle of a bad episode it scares you witless!

[Kind51 in reply to dragonsinger]

I was experiencing them on a regular basis years ago and I was referred to cardiology. After a 24hr monitor only ectopics were picked up but cardiologist said your really need to wear a monitor for a month because bad episodes were unpredicatable. Right towards the end of the month of wearing the monitor it picked up SVT which was diagnosed by the cardiologist. Looking back, at the time of my troublesome episodes I was very exhausted. Making sure I got enough sleep helped me but it's still a mystery why it all began in the first place. I was told the SVT was not dangerous. I'm a lot better now.

It might be worth asking for a referral to cardiology?

[Kind51 in reply to dragonsinger]

I can sympathise because you're right when you are in the middle of an episode it is scary. I remember worrying about them at the time. It does take over your life when they are happening all the time.

[Kind51]

Mine felt like my heart was missing a beat

[Dizzydory]

hi dragon singer,

I totally understand how you are feeling. I was having all sorts of irregular heartbeats that lasted for three and a half months. They made me feel exhausted and scared me witless. GP told me they could cause blood to pool in my heart which could eventually lead to a stroke which freaked me out even more! He organised a holter for one week but by the time I got to the top of the waiting list for this (8months later) my heart had settled down and I was only getting occasional weird beats. Also only had the holter for 24 hours not the week as promised so although it picked up a few ectopics I was told it was nothing to worry about and it’s all down to anxiety! Over the next year I had numerous trips to A&E with chest pains, breathlessness and radiating pains to my shoulder, back or jaw all following long bouts of the weird heartbeats. Told not having a heart attack each time but it was just anxiety, acid reflux, asthma ( different diagnosis every time) and sent home with the exact same symptoms I went in with!? This left me in anxiety limbo as I felt I wasn’t going to go back to A&E again if I had the same symptoms as I felt I was wasting everyone’s time but was told next time It might be a heart attack. All soooo confusing. I too have naturally low blood pressure which goes lower when I have these episodes.

I think the lack of understanding from the medical professionals makes everything worse and causes us to have the anxiety which then exacerbates our conditions.

On a more positive note I have now seen a cardiologist and am undergoing tests to try to get to the bottom of things.

I have found a lot of comfort and reassurance from this forum and it definitely helps knowing you are not alone. It also gave me the confidence to persevere with getting a referral to the cardiologist and not just give up and sink into depression which is where I was headed. I’m a lot more positive now and hope I can help anyone else who finds themselves in the same situation.

Hope you are having a good day today.

Take care x