irregular heart rythmn

[wbekim]

after all heart test come back as structurally normal told have to live with condition as burden and indiscriminate nature of arrhythmia make any procedure more likely to enhance condition rather than alleviate missed beats fluctuations flutters come and go at any time morning afternoon or night before or after eating or during or after exercise no pattern at all it is more like existing than living quality of life almost non existent anybody else at this stage

[Bailey2004]

yes I’ve been where you are. I had ablation 2 years after being diagnosed with AF but this left me with frequent ectopics which had huge impact on quality of life as well and I also felt I was existing rather than living. Told would be forever chasing the arrhythmia to ablate so further ablations unlikely. I’ve done everything in my power to try reduce episodes by carefully watching what I eat and drink (no alcohol, caffeine, refined sugar, artificial sweeteners or additives), lost 2 stone to a healthy BMI, gentle exercise at least an hour every day and although I saw improvements was still not helping fully. I found that my stressful job and any stressful situation exacerbated my condition as well so I’ve taken step back from work the last 6 months and noticed a huge improvement, it’s been life changing. Still get episodes every other day for unknown reasons to me but can cope so much better with them. I still work hard on a daily basis to keep my diet right and exercise levels where they need to be. It’s hard work that’s for sure but I’m in a much better place physically and mentally. I’m also still on 100 mg Flecainide daily.

Hope you find something to help you, everyone is different in how they manage their condition, that’s what I’ve found from this forum.

[Malayabalaya in reply to Bailey2004]

It’s interesting to hear how well you’ve managed the ectopics. Mine rose to 22% of beats at their worst but like you Flecainide has basically got rid of them. I was started like you on 100mg a day after betablockers failed to improve the ectopics. I was told this was an”initial “ dose and may need to be increased and indeed I found that in the last couple of hours before a dose the ectopics would usually break through. So now on 200mg daily and only ever get ectopics if I have too much alcohol. Fine with a few glasses of wine but no more! Thought the dosage may be of interest to you assuming you don’t suffer from side effects from the Flecainide. I asked Cardiologist why Flecainide worked and not Betablockers and he said he didn’t know. Not a huge amount of knowledge re these arrythmias! All best to you

[Mugsy15]

Going off the sparse info you have provided:-

Many of us have been diagnosed and told our hearts are structurally normal; that doesn't mean we are sent away and told to get on with it, that's ridiculous!

You need to wear a Holter monitor for a few days to identify what condition(s) you have. You need to discuss those conditions with an arrythmia specialist in your local Cardio dept. There are numerous treatment options including medication and/or surgical procedures.

You don't say who it was who fobbed you off so dismissively, but my advice is to see your GP, explain what has happened so far and ask for referral to Cardiology.

[wbekim in reply to Mugsy15]

Sorry not to reply been abroad with limited internet my condition is thousands of missed beats/flutters daily which cause intense anxiety and ultimately depression so random cannot associate with anything specific other than cycle of symptoms anxiety/stress symptoms anxiety/stress which is so hard to break when you feel like you are going to have a heart attack at any moment

[Mugsy15]

Yes, from several previous threads I know that's the experience of many of the subscribers to this forum. I have lots of arrythmias myself but since my Ablation almost none of them are AF so I simply ignore them. Ectopics, pacs, pvcs, svts, whatever label one attaches to them; they don't cause heart attacks. After decades of them it dawned on me that despite the alarming sensation, nothing else happens and I must simply accept that my heart is like that. I find that staying well hydrated is key to minimising the disturbance.

As a First Aid instructor I teach my learners about the warning signs of impending heart attack and they don't include ectopics. The more you are able to accept this, the less power your anxiety has to worsen the symptoms. Easy to say and to type, I know! But I hope this helps a little.

[wbekim in reply to Mugsy15]

Thanks mugsy what would you class as being well hydrated

[Mugsy15]

The recommended amount for general population is currently 6 to 8 glasses per day. I personally think that's over the top for most people but about right for those doing hard work or exercise or being active in a hot environment.....and those who suffer arrythmia!

My own method is to always have plenty of 500ml bottles of still spring water in the house, and to have one 'on the go' through the day. When it's empty I fill it from the tap, and do so 4 or 5 times. A bottle will last me maybe 3 days before I start another, as it's not recommended to use the cheap plastic bottles too many times. I generally drink smallish quantities at a time, or more if I've forgotten for a while.

I don't pretend to know what the science is behind why it helps, but I can say for certain that allowing myself to become even a little dehydrated is asking for a Prog Rock drum solo from my heart.

I do pay the price of urinating more often than I would like, but that's down to my enlarged prostate rather than anything else and it's a small price to pay. For this reason I don't drink a lot after 6pm, to avoid being up and down through the night.

[wbekim in reply to Mugsy15]

Can these irregularities be attributed to a normal heart reacting in an abnormal manner for no apparent reason

[Mugsy15]

I can't give you a Cardiologist's answer to that as I'm not one! But my heart has been found to be structurally sound, so at least in that sense I can say yes to your question. Put very simply, the plumbing is fine and there's a fault in the electrics.

[wbekim in reply to Mugsy15]

I just feel so bad and have had no quality of life for decades even holidays are a torture and when I go away I can’t wait to get back but the symptoms continue

[Mugsy15]

It may be worth seeing your GP and asking for a referral to an arrythmia specialist at your local hospital. If it's anything like my area you'll speak to a Nurse Practitioner in the Cardiology dept.

[wbekim in reply to Mugsy15]

Thanks for advice just hard to accept when flutter occurs every day for hours on end that it’s not damaging heart or leading to death

[Mugsy15]

Yes of course it is. However I have known people in their nineties who had arrythmia from middle age.

I don't think that means you should see yours as untreatable though. Please see your GP and explain how debilitating it is to every aspect of your life. Speak to someone who deals with people just like you every day.