Struggling with Ectopics and Sleeping - Arrhythmia Alliance

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Struggling with Ectopics and Sleeping

AMcDonald profile image

Hi all, happy new year.

I have been really struggling over the last 4 weeks with my ectopics, they’ve never been this bad for such a long period and I’m getting frustrated. I had my booster jab at the beginning of December and then my family came down with covid just before Christmas so I can put my symptoms down to that. Now I’m at that time of the month where my hormones are going all over the place so my heart has just not had a rest. My ectopics have been awful during the night - I have woken up at 3/4am every night for the last few weeks with really powerful and irregular beats, causing me to get all flustered and sweaty and I don’t get back to sleep for another couple hours, which makes me feel rubbish the next day because I haven’t slept long enough.

I’m currently on 3 x 50mg flecainide spread evenly throughout the day but I’m wondering whether I could take an extra one at 4am when the ectopics get most troublesome…? Haven’t been able to get hold of my cardiologist for a couple weeks so thought I’d reach out on here! Thanks.

15 Replies

Grim! I feel for you. This was the pattern for me when mine first started too. I can't help with the flecainide, as I declined to take it in favour of HRT. But I read your other post. We are at very different stages of life but I am totally convinced that hormonal fluctuations are ruining my life. I haven't got HRT right yet but it really has made a massive difference generally to the heaviness of my ectopics, and also their frequency. The last few days I have been set back months on my road to normalcy since getting a covid booster. So I hear you on that one too.

Thanks for your reply. Ah I see, yes I don’t like being on the arrhythmia medication and I would prefer to get my hormones under control because I am convinced it is what causes almost all of my symptoms! But at the minute I just don’t see another option and all the specialists I’ve seen have never suggested anything else to help…

Im glad to hear HRT has helped with your ectopics in general and sorry about the covid booster causing a flare up - I hate the effects of these vaccines. Wishing you all the best in your journey back to normality.

Yes at least being mid-40s it is fairly straightforward (on the scale of things) to get someone to look at your hormones. I really hope you get some relief from the ectopics. I did find that Melatonin helped me sleep through it and getting a decent amount of sleep helped reduce anxiety and just symptoms of exhaustion.... But I live in Australia and can get melatonin prescribed which isn't so easy if you're in the UK.

Also FYI I also get horrendous pins and needles in the night. It's only 11pm and my left little finger has already gone numb. That doesn't help with the sleep either...

Yes haha, not so easy when you’re 20🤦🏻‍♀️ Thank you. Melatonin? That’s interesting, I’ll look into that. Yeah I do find that the less sleep I have the worse my ectopics are but it’s so difficult to get out of that cycle!

Really?! That’s so strange, sounds exactly like me! Do you know the reason for your pins and needles? I’ve got an appointment with a neurologist at the end of the month to talk about mine. I also get burning hot thighs at night too, not sure if that’s linked lol. But yes this all contributes to a rubbish night sleep…

You are young to be coping with this AMcDonald, and I think the answer is more discussion with your doctor (sorry I know that's not particularly easy right now). It's true that some people are on a 'pill in pocket' regime either on its own or as a top up when needed, but I don't think it's ever advisable to just mess with your own prescription medications. I agree you can't go on like this, but I'm sure between the two of you, some other thing can be tried which might help you. I definitely don't think you should assume that a covid vaccination has produced long term results for something you suffer from already. It might certainly have produced ectopics in the short term. I think that probably underlying all this is the worry that the ectopics produce in you, making you anxious and therefore wakeful. As well as contacting your doctor, you might try some distraction techniques or learn the breathing techniques that are said to help. This one on YouTube is from trusted York cardiologist Dr Sanjay Gupta. Might be worth a try! youtu.be/wo0l2RMdvCY

AMcDonald profile image
AMcDonald in reply to

Thanks for your message. Yes lots of people mention that, I hate having all these issues at my age and I feel like it does ruin my life, especially on days/weeks like these.

Thanks for the advice, yes I won’t change my medication around unless I confirm something with my cardiologist, it was just because I’ve heard that if some people have days with bad ectopics they can just take an extra dose as a ‘pill in the pocket’ as you said. You are right, the worry does make it worse but I can be totally relaxed and they still go crazy, like I’ve been waking up at 4am for the last few nights because the ectopics just start thumping and then I’ll sit up, stay relaxed and try to get back to sleep but I have no luck, I always just have to ride it out for a few hours - nothing seems to get rid of them quicker.

Thanks for the YouTube video link, I will take a look, I’ve seen some of his videos before. All the best x

in reply to AMcDonald

Hi AMcDinald, just like to add to my reply that I hope you don’t get the impression I’m blaming any anxiety you might have, for your ectopics. I know that’s not true and used to go crazy when medics would suggest this was the cause for my own AF before it was properly diagnosed. I think it can have an effect but it’s certainly not the cause and I’ll fight anyone who says it! (Only kidding, of course!) 😄😄👍

AMcDonald profile image
AMcDonald in reply to

Ah no I didn’t get that impression but thanks for your message☺️ I used to get really annoyed at doctors who said the same thing to me too! Completely agree haha

Have you tried magnesium? Many here take magnesium to calm down the palpitations (I'm in the USA and we call ectopics palpitations). I also take extra vitamin C. Sad thing is too many Drs don't test for nutrient deficiencies in patients. You can be deficient no matter your age. Don't know if you have a Dr who would address this. But it's important. Good luck. Hope you find a solution.

Yes I’ve been taking magnesium for a while now but not noticed any improvement. Vitamin C is about the only thing I haven’t tried haha, maybe I’ll give that a go - thank you! It’s impossible to get an appointment with a doctor over here, especially when it’s to do with vitamin deficiencies etc. it’s a shame that most doctors don’t believe it herbal remedies and supplements.

Thank you x

I think Drs quit "doctoring" long ago. Sigh.... Here in the USA too many have become pawns of the insurance companies. Leaving us patients to figure out things on our own. It's getting worse. I know people whose Drs are retiring because they can no longer deal with the insurance companies dictating what they can and cannot do. Hoping you still find your solution.

Take care and be safe.

Couldn’t agree more!🤦🏻‍♀️

Thank you, take care yourself x

I went back to this post. You may want to check and see if you are getting enough potassium too.. I think the low range we need is around 2700 mg per day. But don't want to overdo either. If the Drs would test our nutrients we would not even be discussing any of this. 😡 Hope you are doing well.

Ah thanks for reaching out again! Yes I’ve heard about potassium and I did actually get my Dr to check it - the first time it was slightly under the normal range and the second time it was borderline so he said it was fine and nothing needed to be done🤦🏻‍♀️ But yes I completely agree, they’re so important and the Drs don’t even bother to check it😠 Thank you, hope you’re doing well too.

Thanks.

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