This and That about AF: My mother,sister... - AF Association

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This and That about AF


My mother,sister,myself and now my 56yr old son have AF. Mum died at 87 after a series of strokes, she was fit and active until then. My sister is 73 was in permenant AF for 2 years, and has had a Maze procedure and remains in NSR on Apixaban. I have Paroxsysmal AF which lasts a few hours each time. I am active 77, had ablation, on Apixaban. My son who is 56 has had two Ablations is in NSR on Apixaban, but after six weeks is still getting optical migraines... I wonder how common this is?

I also read on this forum about the Vagal Nerve and its implication in AF. Both my sister and I have mainly gone into AF in the evening after a meal or on going to bed and lying on the left. Whenever my sister is in AF she gets a dry cough, which stops as soon as she is in NSR....

We are all keen walkers, not overweight, no cognitive problems, and all just get on and enjoy life. AF is an inconvenience that some of us just have to live with. Just keep taking the pills and some magnesium if you believe it helps. Reading on this forum can be a help to new members too.

16 Replies

Your story certainly supports the role of genetic factors in the development of AF. I also have AF in my family - mother, aunt - we are all fit, healthy, active, with low blood pressure and no additional risk factors. Sometimes, our condition is just a consequence of how we're put together.

Very interesting

Also regarding longevity a lady nearby was 93 when she died fit and well until then

She had AF for 30 years no treatment as far as I understand either

in reply to Hardjuice

My mother is 25 + years of afib and she is 91 yrs old now. She usually has an episode every day now, but she counters it with "square breathing" and meditation. She has certainly learned to live with this condition. She is on Eliquis, losartan, and Metoprolol for afib now. She used to take Tikosyn and digoxin, but the EP took her off those two drugs when she switched to him over a year ago as a new patient. (But she had been on those 2 drugs for almost 5 yrs and he felt she was probably immune to them after that amount of time and not doing her any good anymore).

Also - My mother's first cousin has afib too. And both have macular degeneration causing me to wonder how that happened! Did they both get the same roll of the dice?

Thank you for your contribution, 91 and still with us! It does show what an amazing organ the heart is. Metoprolol is also my Dr's choice of treatment with Apixaban. I have Flecainide as a "pill in the pocket" in case I go into AF. I haven't heard of "square breathing".

Hi and thanks for that as it encourages so many people newly diagnosed that we can live mainly healthy and happy lives into old age. Not true for everyone of course.

My father had AF and died in his late 80's so there is a family link in my family, I can mostly control my AF vasovagal maneuvers now, as long as I watch trigger - mine are eating large meals, getting up after eating and walking around - as long as I stay seated for 15-30 mins and rest I am OK, eating any bread or starchy foods such as potatoes, root veg etc. I have also been doing some exercises for increasing vagal tone - humming, using a power breather and singing are all good. Learning total relaxation is also good.

Look for a small book on Kindle - How To Heal your Vagus Nerve.

Thanks CDreamer that sounds really interesting!

in reply to CDreamer

That's very interesting about the vagal nerve. My cousin has had 3 ablations and still having problems but reckons it stems from the stomach. When I was last in PAF, I took the tablets did yogic breathing every day as well as having regular massages, took lots of walks and returned to NSR after two months.

Knowing what triggers must be a big help.

in reply to JackyMac

I ate a large meal with chilli in (not supposed to!) and my heart was very unhappy for a day, no AF but palpitations - I was conscious of it beating and having short bursts of arrhythmia now and again.

AF runs in my family too.

Yes, it runs in my family too - I know my cousin has AF and in my ancestry researches I came across a great-grandmother's death certificate which had 'pneumonia and arrhythmia' on it. I'm sure one day they will discover what exactly is responsible...

Hello Polly :-) welcome. My goodness, you certainly have a lot of AF in your family.

My brother and myself both have P-AF, I have a feeling my father may have had it too but was never diagnosed, he often clutched his chest and said he was 'breathless and having palpitations'.

I posted yesterday about some new research being undertaken in Australia

''Their world-first study of the role of a gene in predisposing people to atrial fibrillation aims to detect or even predict the condition’s occurrence.''

Hello Doodle68, Very interesting research, it's a pity it's Melbourne, I'm in Perth....but it will be great to read the results when the study is published.

I am always amazed about the number of electrophysiologists in America. Possibly in Europe you have lots of them too. This field is growing like a mushroom. Unfortunately there is no research in pharmaceutical field and most ablations are unsuccessful. I see that every EP is so eager to do ablation and then takes a distance from the patient because it was unsuccessful. We just have to accept that there is no cure for AFib in this time, but plenty electrophysiologists. I hope I am not too pessimistic.

in reply to Choroba13

I wouldn't say most ablations are unsuccessful. I would like to know how you came by that conclusion and the evidence?

It isn't a cure for sure, but it does improve QOL even if you still have some Arrythmia. I have had 2 ablations which eliminated very symptomatic AF with several hospital admissions which severely limited what I could do.

I was AF free for 2&half years. Vagal PAF has returned but I am not nearly as symptomatic, although it does leave me drained and exacerbates another condition.

in reply to CDreamer

All the major arrhythmia drugs like flecainide, propafenone, Tykosine, amiodarone, Norpace etc. are old 60-70 years. There is nothing new coming up. Cryoablaltion didn’t solve afib and lots of electrophysiologists today are trying to combine RF with cryoablation. Yes, I am pessimistic because I turned to a well-established institution and still it was unsuccessful. I have a vagal afib. Vagal afib is not well researched . There are still debates what to do about the ganglia that are embedded in the fat pads on the top of the heart. They do occasionally trigger an afib event. Before the ablation there is always so much optimism and promotion of success by the doctors, but after that you get the reality that just 70 percent of ablations are successful. I would say today it would be just below 50%. You never get the correct numbers from the electrophysiology department in spite of frequent requests.

in reply to Choroba13

Whilst I agree with you about vagal AF being less well understood - see my recent posts - there is research going on in U.K. with ganglia ablation and some VERY interesting studies.

And I also think that vagal AF is the easiest to self control - you can heal your vagus nerve with lifestyle, relaxation techniques and exercises.

I am sorry it didn't work for you but unfortunately there is no one fit all with AF - or any other condition that I have come across as we are all so individual.

In the future, probably a long time in the future, when everyone has a full genome scan, we have personalized medicine, we may have improved treatments but until then it's the best on offer in y view.

I am sorry that you are so pessimistic about your AF. I think that you might take heart from the many people who have reported a reasonable quality of life whilst living with AF. It's not a death sentence. Taking medication when indicated, having a good social life, eating well, and keeping active all helps. Have you tried breathing exercises, researched the possibility of taking magnesium, doing some sporting activity, learning a new hobby? It does help to take the focus in your life away from AF. Best Wishes.

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