Ectopics gone wild!

[Bmwpaul1971]

Was diagnosed with SVT last year and had On going ectopics for the last 20 years. Last year had episodes of thousands a day and was changed from proprananol to bisoprolol 5mg. Never had anything like that many before and it has made my life a misery since. Had lots of stress and diagnosed with a hiatus hernia too last year which has a massive impact on the ectopics. Saw the cardiologist today who was really nice. It did show an ectopic on the ECG but he said it was fine. He has upped my bisoprolol to 7.5mg but I don'

[Bmwpaul1971]

Sorry hadnt finished. I don't think they helped. He said I was on the correct drug for ectopics? Does anyone take anything else other than bisoprolol? Also he said an ablation is not suitable for ectopics as they are hard to eliminate. I cannot continue to have thousands a day as its debilatating and I have no faith upping my dose is going to make any difference. Is anyone else in the same boat?

[hebrides2 in reply to Bmwpaul1971]

Hello there,

My situation is very similar to your own. I suffered from ectopics since 1973 but never learnt to live with them. I had an ablation for AF when that, too, added to my misery. This seemed to eliminate the AF although I had lots of short runs of atrial tachycardia but the ectopics continued unabated despite all the medication that I had been prescribed.

My cardiologist In Glasgow suggested that I go onto flecainide which is classed as a “dirty drug’ often used for AF but used to control heart rhythm in general if nothing else seems to work. With nothing to lose, I started to take flecainide with an initial dose of 150 mg with the advice to increase this if it appeared not to be working. I eventually ended up taking 250 mg daily and am still within the maximum safe limit. I have taken this medication for 20 months and the ectopics have been virtually eliminated, with very occasional episodes coming to the surface when I am under a lot of stress.

I would tend to put this to your cardiologist, and not to take ‘no’ for an answer.

Best of good luck,

Donald

[Bmwpaul1971 in reply to hebrides2]

Hi Donald, thanks for your reply. I am very scared of flecanide from what I have read. I don't want to be on a heavy duty heart med at 47 years old unless totally necessary but I can't go on like this.

Thanks

[meadfoot]

I have had phases of ectopics in the thousands, 17,000 or more a day recorded. They are very debilitating when at that level. They seem to come in episodes then settle again. I also have a hiatus hernia and one seems to affect the other. I have svt which is horrendous when it kicks in.

I take atenolol and have flecainide to take as pill in the pocket when I get af or svt. The svt is far more troublesome than the af I find. I feel for you.

[Bmwpaul1971 in reply to meadfoot]

Hi thanks. It is nice to hear i am not alone. My worry is all these ectopics are going to weaken my heart which is the most distressing. Does atenonol keep them at bay? I think they prescribe bisoprolol for everything!

[meadfoot in reply to Bmwpaul1971]

I was taking atenolol years before ectopics started but I think because my heart is slowed with atenolol it keeps the ectopics from overpowering much of the time.

I think hiatus hernia and generalised stomach issues trigger my ectopics much of the time. I have asked about hiatus hernia repair as recent as a couple of weeks ago but yet again was told the effects of repair brings their own problems and is not recommended. It's a catch twenty two situation it seems.

[Bmwpaul1971 in reply to meadfoot]

What complications does the hernia repair cause? As I am asking the dr to be refered back to gastroentology tomorrow in the hope of a repair? My stomach definately brings on 70% of my ectopics. If i am bloated and have tonnes of ectopics I can stop them by being sick! It's depressing

[meadfoot in reply to Bmwpaul1971]

I too see my gastroenterologist next week. He is an idiot so have little faith in him and am in the process of changing to a new one,

Last year when in hospital a medic said my hiatus hernia needed repair to help my acid reflux and said it was an easy op these days.

However I have recently been in the care of a pancreatic and liver surgeon and just two weeks ago I asked him about repair. He said the side effects were rough. You cannot burp again, get constant bloating unrelieved and vomiting is an issue. I had read that on Google also so it seems to be an accurate response. They love to give you ppis for acid reflux and don't seem to operate unless it's close to being strangulated. The gastro guy I am seeing Monday said a similar things. Seems getting a repair is quite difficult.

[Bmwpaul1971 in reply to meadfoot]

Hi, oh great! My dr has just refered me back to gastroenterologist today but similar I don't hold much hope.

I would rather have those symptoms any day than these constant ectopics mind

[doodle68]

HI BM Dr Gupta has made a whole load of videos on Ectopics so I won't post a link.

Go to Sanjay Gupta York Cardiologist Ectopic to locate the videos.

[Bmwpaul1971 in reply to doodle68]

Yes thanks I already know and have seen lots of them 👍

[doodle68 in reply to Bmwpaul1971]

Hi BM I hope you can find something that works for you. I went through a period of ectopics just after I was diagnosed and started medication. It felt as though my angry heart thwarted and unable to race away due to medication was trying something else instead.

The ectopics have gone now (or if not I am not aware of them) along with my anxiety about having AF. I feel 'in control' of my situation now and it no longer bothers me so I guess this is linked.

Bob mentions breathing exercises which I have learnt to use not only during AF episodes when using it distracts me from the AF but also during my long daily walks through the fields which are part of my getting fitter and general life change strategy.

I am more relaxed about everything now and refuse to get stressed or even to argue with family members I tell them 'I am not doing this I am walking away'. I have been so shaken by having AF I feel I have to prioritise my health now after a lifetime of worrying about and looking after others.

When on my walks (or during episodes) I take long slow deep breaths in through my nose and out through my mouth counting always more counts out say 4 in 6 out (whatever feels comfortable) . I tried diaphragmatic breathing but found it counterintuitive like patting my head while rubbing my tummy

[BobD Volunteer]

Search Ectopics top right and you will find lots including the famous slow breathing exercise which works well. .

[dmjtanner]

Hi Bmwpaul1971, have you tried taking magnesium supplements? My EP suggested those supplements several years ago, and they have been immensely helpful. He started me out on a pretty high dose of 500 mg twice a day and told me it would take several weeks before I might notice a difference. After about six months I was able to reduce to 250 mg twice a day and now I take 400 mg once a day. He did tell me to back off of the dosage if I experienced diarrhea. It is a little bit of trial and error. I have also read about magnesium on this forum as well. Hope this helps!

[Bmwpaul1971]

Hi, I started on magnesium about 3 weeks ago 400mg but not helping as yet. I have also started Co q10 100mg but don' know if that is enough? I have changed my anxiety tablets today also as my previous ones I have just found out can contribute to ectopics

[Gwersey]

Chicken or egg situation. I'm asking myself which came first, my hiatus hernia or ectopics? Can't remember the point where I had only one or the other.

[Bmwpaul1971 in reply to Gwersey]

Totally agree. No point trying to work that out, best figure a way of helping yrself improve

[porthole1]

Hi, I suffer with SVT ,and take 7.5 bisopralol every morning with 2.5 as pip,I have found that when my heart goes into SVT I begin coughing as if choking,I keep this up for up to 20 mins,so far this has stopped the last 6 episodes , good luck,it’s worth a try...

[greg35]

Hi I also suffer with ectopics had 2 ablations lsst year but still not sorted I am also on Flecanide 50 x 2 and Nebivolol which has helped to give me my life back to some degree I couldnt go on any longer with the ectopics thousands every day! My EP has recently contacted me with information about new equipment called Contact Force which he feels will be able to eliminate the ectopics, has anyone had experience or heard about this equipment? I hope you get sorted soon,

Regards Ingrid

[hock217]

Have you considered ablation?

[Bmwpaul1971]

My cardiologist said they do not do ablation for ectopics anymore as they are too hard to find and not a good success rate