Ectopics: Hi, whilst I have read many... - Atrial Fibrillati...

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Ectopics

Gillie12 profile image
34 Replies

Hi, whilst I have read many posts on here for a while now I hadn't until now posted my plight. I am 54 now and have suffered from heart different forms of palpitations for years but over the last couple of years have been far more troublesome and debilitating. I take propranolol which help to a point but if Im late taking a dose my ectopics return and heart jumps around all over the place, it's so scary, I will never get used to them. I have a prolapsed mitral valve which drs don't seem to be worried about but say it can be associated with palpitations. The irregular beat comes from two areas in my heart, neither of which are in a place where they can ablate, therefore I never have peace of mind and feel I can't lead a normal life without the worry of the onset of palpitations which have caused me to go to A&E on several occasions. Always get told they are not life threatening but they are just a nuisance. I am on holiday now, awake in middle of night having popped to the loo and can't get back to sleep cz ectopics. Mine seem to be aggravated by needing to pass water and sometimes happen after a bowel movement don't understand the correlation! Anyway, please can anyone give me some advice or comfort as I had palpitations on the plane coming 2 hours beore landing and am now worried about the. 8 hour flight home to gatwick from the Dominican Republic in case I get them and they won't settle with propranolol. Obviously the anxiety makes them worse. I am so fed up with them interfering with my life. I am always thinking about what if it happened and I am not near a hospital as hw do i know if the irregularity is be same and not dangerous. Do try not to have caffeine anytime as know this aggravates. Have found this site comforting. Any advice welcome especially before flight home on Sunday 2/7. Gill

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34 Replies
meadfoot profile image
meadfoot

Morning Gillie, I understand completely how you feel as I am plagued in the same way as you. These ectopics are very disturbing and keeps our mind firmly on our hearts when we are desperate to just get on with life freely.

Regarding your flight home, please drink lots of water to keep hydrated as dehydration can trigger episodes. This might be counter intuitive for you as you say trips to the loo can bring them on however dehydration is to be avoided.

I had a similar experience flying last month and it is a stress but remember every minute on the plane is one closer to home. Can you distract yourself with reading etc not easy I know, easier if heart is calm but once it shows its hand it's a free for all in the mind.

Holidays become a trauma, as you say not being close to a hospital you know is a worry but you are being brave and getting on with life in spite of it .

Can you try some relaxation exercises and breathing techniques to help quieten your mind and body ready for the flight and while on it.

If you have an iPad or iPhone I would read some of these replies while on the plane if you can to give you reassurance that we are all with you and supporting you and understand how you feel. Its awful dealing with this all the time and completely understand, I know where every hospital is wherever I go because I so often need to be there with the severity of my af episodes.

Will be thinking of you. Enjoy the rest of your holiday and relax as best you can. X

Gillie12 profile image
Gillie12 in reply to meadfoot

Thank you so much for understanding and info. I agree dehydration can cause them, even the consultant mentioned that, surprised me as they don't offer much advice, don't think they know the causes of palpitations in most cases, just give you pills and leave you to get on with it. I do try to get on with my life and not let my palpitations affect anyone else's life. My husband doesn't understand so I suffer most of the time in silence. I will take up your advice for flight home. The help on here has given me so much comfort and I no longer feel alone with it. Thank you x

BobD profile image
BobDVolunteer

There is a very good breathing exercise which for many people can either stop of reduce ectopics.

Find a relaxed pose either laying down or in a chair. Slow your breathing down to less than six breaths a minute and make sure that you breath from your diaphragm not your shoulders. Breath in slowly pulling right down with your stomach muscles until you can't pull any more. Try to count to ten very slowly. Then breath out slowly pushing your diaphragm up and scrunching your stomach to try and touch your spine. Slowing to six per minute is easy and of you can get slower still all the better. Do this for at least five minutes and longer again if possible.

Good luck. Trust me it does work for many. It won't stop AF but works wonders for ectopics.

Gillie12 profile image
Gillie12 in reply to BobD

Thank you for taking the time to reply, will try the breathing exercises for sure.

Torvi profile image
Torvi in reply to Gillie12

Hi Gillie12

I will be going back to my Consultant to start treatment for my ectopics as soon as I see a psychiatrist he has referred me to .

I had a seven day monitor fitted , it’s just a patch not a loop

monitor, I pressed the button 20times as I felt the ectopics, however when he went over the ECG day by day with me, I was only having ectopics on six occasions,this assured me that the rest of the time I imagined I was having ectopics, I was tuned into my heart 24/7, the ectopics ruined my life , since meeting with him , I feel so much better about the future , I am having far fewer ectopics and more relaxed about them , I will update you when I start the treatment. Safe journey.

Torvi

bantam12 profile image
bantam12 in reply to Torvi

How can yo imagine ectopics ?! If they are happening you can feel it in your pulse, I get 10-15 a minute and definitely not imagined.

Torvi profile image
Torvi in reply to bantam12

I was definitely imagining that I was having them , it was clear from the 7day printout of the ECG, every time I pressed the button a red circle appeared on the ECG, it proved that I was only having ectopics on six occasions but I though I was having them on twenty occasions!

It was read by a top Professor who specialises in AF, that’s what I was diagnosed with by another Cardiologist, I went for a second opinion and I haven’t got AF.

I trust he knows his job!!

bantam12 profile image
bantam12 in reply to Torvi

Thankfully mine all show up on ecg, echo and stress test so I'm heading towards getting some treatment.

Unfortunately doctors have different opinions which is not good, I've seen 3 Cardiologists and each one has said something different.

Leaves us not knowing who to believe !

Torvi profile image
Torvi in reply to bantam12

Bantam

I’m putting my trust in the Professor , he is an expert in AF. I wish you well.

Torvi

Staceyhunter profile image
Staceyhunter in reply to bantam12

15-20 a minute? I just counted about 8-10 within a couple of minutes! Really really scared me! Have you got A-fib? I dont, but bloody hell that was awful what I just experienced

2468abcmuk profile image
2468abcmuk in reply to Staceyhunter

Sometimes I get 30 in 1 min

& other times 7or so had loads ekg and definitely pvc ectopics not AF

Staceyhunter profile image
Staceyhunter in reply to 2468abcmuk

Oh goodness mine are getting worse now though just one after the other like you it seems to be I have just a few of them and other times most of the time now adays I'm experiencing loads of them...its just awful.

Finvola profile image
Finvola

Ectopics are such a pain and it's not particularly comforting to be told that they are harmless. There is a breathing exercise which has always worked for me to stop the horrible things.

Briefly, relax and breathe deeply and very slowly with your diaphraghm. Take no more than 6 breaths per minute and continue the exercise for 5 to 10 minutes, longer if necessary. I find counting during breathing helps me to concentrate. If you search on the top right box for Gupta ectopics you'll find a very useful video explaining the process which works on the vagus nerve.

It's so easy to say 'relax' but it really does help to calm the worries, which in themselves make our problems seem worse. I hope you have a good flight and a calm heart.

Gillie12 profile image
Gillie12 in reply to Finvola

Thank you very much for your kind advice and understanding, will try the breathing exercises.

souljacs4 profile image
souljacs4

Go onto u tube search for Dr Gupta videos on Magnesium and ectopics.

Gillie12 profile image
Gillie12

Thank you for your advice, will do.

Your plight mirrors mine,it has affected my life for many years. I don,t go abroad on holiday anymore. Sorry i can,t give you any help with your journey home but I will think about you, you will survive we always do.

Gillie12 profile image
Gillie12 in reply to

Thank you, so good to find people who understand how frightening and restricting suffering from irregular heart beat can be.

You've been given some good advise but I would add well done you for continuing to go on your holidays feeling like you do - give yourself a pat on the back for getting on with life and not letting the problem beat you. Well done.

Mrchips profile image
Mrchips

First off, easier said than done is to try not to think about ! It's a viscious circle. When u get these etopic beats after going to the toilet that could easily be down to a blood a pressure spike ( which is how my AF started ). But I've been assured that etopic beats are harmless ... but again I totally get that when I have them they freak me out completely. I try and deep breath ..... kinda meditate ..... keep calm if I can. Apps on be phone like Calm or Headspace I find help. This will help I hope coz I find it helps me.

In regards to the flight .....1) sleep as much as u can before u fly back .... relax .... you'll be fine. 2) keep hydrated. 3). Try and sleep if u can on the flight ( I can never on a longhaul flight ). Again deep breath / meditate. 3). Avoid caffeine and any foods that can may cause palpitations. ( caffeine/ alcohol / and high amounts of sodium can affect the body).

Hope the above helps !

philologus profile image
philologus

From my own experience I can say that ectopics are not as benign as you might think - it depends on how many of them you are having.

I had 30-40,000 a day for a few years and it led to heart failure at the worst level. (4)

Medication reduced this to 20,000.

I am now almost ectopics free (400 a day) and my HF is now level 2.

There was a video posted on here a little while ago where Dr Sanjay Gupta said that if you reduce the ectopics your heart can begin to heal and you can improve.

This is not meant to frighten anyone but I felt that the thread needed to be balanced as ectopics are not always benign and they can be very uncomfortable and worrying at higher levels.

I tried the breathing ideas mentioned above and they often helped me to get some sleep at night so they are well worth trying.

I have posted elsewhere about what helped to reduce my ectopics so I won't repeat it here but if anyone is interested then search for my posts about using nascent iodine.

Regards and best wishes for a safe and comfortable journey home,

George

greg35 profile image
greg35 in reply to philologus

Hi I know exactly how you feel in my case I flew last week after my ablation 8 weeks ago! ablation was for ectopics which has reduced but not by any means eliminated them, I have changed my diet so eat lots of foods with magnesium which are eggs bannanas and handfuls of pumkin seeds spinach and so on, I ate loads of pumkin seeds on both journeys and it seemed to help the ectopics, maybe was all in my mind but worked for me! Also drank lots of water, I dont eat any processed foods or meats no spices tea or coffee just water no sugar either

boring but helps, do the breathing and read I also take an ipod and listen to music I find that calms me down, hope this helps and post when you get back! Safe journey home.

Ingrid

Gillie12 profile image
Gillie12 in reply to greg35

Thank you very much for info, I will try some of your suggestions re diet, will try anything!

Gill

Gillie12 profile image
Gillie12 in reply to philologus

Thank you George for this info. I have been at home having had a good flight back since Monday now, however I have just been awakened by an episode of ectopic beats which bothered me as it wasn't that long ago I had my dose of propranolol. They always come back if I miss a dose but it makes me very anxious when they happen otherwise. I hate the sensation in my upper chest and throat and feels like breathing is interrupted (hard to explain) but is hard to ignore. I always worry that what have previously been troublesome but benign palpitations could be more sinister as makes me feel so rough. Obviously the anxiety doesn't help! I am exceptionally tired at the mo as busy with everything returning from holiday so could have triggered this episode. Would be interested to know if anyone else has similar sensation with breathing alongside ectopic?

CHRISAF18 profile image
CHRISAF18 in reply to philologus

George would love to know more can't find your previous post know nothing about your nasient iodine. If you could send me your link that would be very kind. Thank you. Chris

greg35 profile image
greg35

Glad u made it back Gillie you are so brave! My breathing also is affected but Drs dont seem to be too concerned when I mentioned this, I have been following the Fodmap diet and I think this is working for me hardly any eptopics for 2 days fingers crossed! Look it up it is restrictive but if it helps you it may be worth it, at the minute im eating just bananas fish corn bread which i make! vegetables pumpkin seeds brazil nuts and lots of water dont know how long I can continue but I feel good for the first time in a year!

Ingrid

Gillie12 profile image
Gillie12

Thank you for your reply and sorry not to have thanked you before now, life has been so busy.

I have had two bad episodes of missed beats over the last 5 days. Can't pinpoint why, apart from lack of sleep possibly . I felt shaken and so scared as they lasted for over half an hour before an extra dose of propranolol kicked in. I was having 3 consecutive beats then a missed one hich made me feel breathless. By the time I got to A&E my heart had returned to normal rhythm as the propranolol had kicked in. so here I am left to wonder how to manage this problem alone again apart from fellow sufferers on here!

Gill

majestician profile image
majestician

Such a downer that these symptoms are really affects once life in one way or another. But good thing to say the least that all of your inputs here really make a difference in terms of how one cope up with it then maybe other can use it as well.

Gillie12 profile image
Gillie12

Definitely, it's a real comfort to know we are not alone as not much support otherwise

Regards

Gill

philologus profile image
philologus

Hello Gill.

I can't find my earlier posts so I'll bore everyone with my story again...

I'm 73 and have had sciatica and arthritis for a looong time.

My Dr put me on Tramadol for pain relief.

I took this for two years and it helped so when I started getting flutters in my chest I didn't link it to taking Tramadol.

It got worse and I went to my GP and asked what was going on. He had a listen and said that my heart was OK and a few ectopics were normal.

I went a few times as the discomfort was getting worse and I was being woken at night when I got a "big one" as my poor ticker tried to figure out when to beat - got it wrong- and then gave me a double one.

After numerous GP visits I was out walking my dogs on a lonely place when I felf really ill and wasn't sure that I'd make it back to where my car was parked.

I went straight to the surgery and asked to be seen by a Dr. The only one available was a trainee Dr who was qualified but just testing the water to see if she wanted to become a GP or not.

Her name was Dr padala and I'll never forget her.

She sent me to hospital and said I should have various tests.

My ectopics were 30 to 40 thousand a day!

I was put on medication for this and they reduced to 20 thousand a day.

I collapsed one day and ended up in hospital again. This time they said that the tramadol had known side-effects and one of them was heart arrythmias and this had caused all the ectopics. My left ventricle was getting so many mixed signals that it was only pumping 18% out.

This meant that I had heart failure at level four - God's waiting room as far as I was concerned!

I stopped the tramadol but the HF etc remained and my quality of life was poor.

I read a post on this site that was asking if anyone had any information aboput taking iodine.

I was desperate and did some serious research for a month and decided that I wanted to try taking iodine.

I got some nascent iodine drops from a company called Harmonic Innerprizes as this is made with vegetable glycerine.

I started on a couple of drops twice a day in water and built up to six drops twice a day over about a week.

I have a Kardia device but I didn't need to use it to find out that my ectopics had reduced. I could feel that they had after a week.

I gradually dropped the dose and now take three drops once a day.

I had an appointment with my EP about six weeks after I started the iodine and went for a scan etc before I saw him.

My ectopics were down to 300 a day (24hr holter monitor) and my HF was down to level 2.

He discharged me!

This was nearly two years ago and I still haven't had any ectopic flutters.

I realise that my problems had a definite cause and so the "cure" might be specific to that and may not work for other people with different causes.

If anyone wants to try nascent iodine I would suggest that you do what I did - research it thoroughly before you decide.

I hope this helps you Gill. If you have any questions I'll do my best to answer them as far as my experience is concerned.

Iodine is not for everyone - it adversely affects some types of medication - esp thyroid medicines- so please make sure that you do your research.

Best wishes,

George

Kingsley09 profile image
Kingsley09 in reply to philologus

I have been taking pregabalin/ lyrica for nerve pain for the last 3/4 months and have started to get more afib attacks I have not have hardly any in the 3 yrs since diagnosed and very mild and I mentioned to my dr could this medication be the cause and she said stay on it and I’ll rite to the cardiologist to see what he thinks but while I’m waiting I’ve decided to reduce my dosage as I don’t know how long it will take for her to hear back from the cardiologist but after what you have said about your medication I think the only way I’m going to know is to stop taking it

coy12ote profile image
coy12ote

Just had pulmonary embolism out of blue. Thought was fit as a flea as am active but have very ill daughter. Bit traumatised. Do a lot of singing. Hope breathing not affected for good.Wonder if will be ok because still fragments in lungs and keep getting muddled with medication. Liked your post. Feel a bit lost. Sorry post all about me. Hope you are well.

bassets profile image
bassets in reply to coy12ote

So sorry you are ill. I hope you will feel better soon.

2468abcmuk profile image
2468abcmuk

was on 11 hour flight & my worse nightmare came true.. ectopics fast and furious most of flight.. honestly you cant feel them as bad up in the air & it was not pleasant, but the holiday was amazing, don’t worry about things that are out of your control, try beeta blocker carvidalo , really helps

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