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Atrial Fibrillation Support

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Not again :(

mamasmith11 profile image
19 Replies

Hi, I'm new here and have just found this site, I don't suffer from AF but my son does, he got diagnosed in October last year at 17 years old, he is an athlete who is very fit, doesn't smoke, drink or take drugs, he was put on medication for this and then had cardioversion done in November, tablets were reduced in January to just one bisoprolol 1.25mg a day and was due to see cardiologist 6th July to come off medication.

All was well until last week when he went on a lads holiday, he said he had about 4/5 alcoholic drinks a night and some late nights and about day 3 into holiday started to get fast heartbeat for about an hour a day then it would go off, when he came home I listened to his heart and it was not in rhythm, we took him back to hospital and they confirmed he is now back in permanent AF.

They have put him back on apixaban 5ml twice a day and kept the bisoprolol the same, he has to wait to sees his cardiologist on the 6th July to see what the plan is now.

We are all devastated that it has returned and so scared for him.

any advice, please x

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19 Replies
BobD profile image
BobDVolunteer

OK I know how this must feel as I have two sons myself.

Firstly yes he is very young but two things you mention speak volumes.

Athletes. especially endurance athletes are very prone to AF as in fact are military fast jet pilots due to the excessive work called on their hearts. Secondly alcohol is a know trigger and in young people binge drinking is common cause of atrial fibrillation although in many cases can be a single event. Unfortunately AF tends to be a progressive condition so the more you have the more you will get.

Now to the future, obviously no more alcohol and be careful with the exercise at all times listening to the body for signs of overstress. A cardiologists is the plumber of the cardiac world and my recommendation would be to see an electrophysiologist who is the electrician. I always say you wouldn't ask a plumber to re-wire your house.! You may think it a good idea to make a private appointment in the first instance to get into the system as many here have. If you go to AF Association main website there is a list by area of specialists as well as a wealth of down loadable booklets and fact sheets on AF which I recommend you read. Knowledge is power.

Finally don;t think that this is the end please. AF is a damned nuisance and can be most debilitating but there is a great possibility that an ablation (Read about as mentioned) can improve quality of life and I would seriously consider this option as at 17. a life time of drugs would possibly introduce all sorts of other problems.

Ask us anything an we will try to help.

Bob

mamasmith11 profile image
mamasmith11 in reply to BobD

Thank you for your reply and advice, Bob, I will take a look at them now.

azriverrat profile image
azriverrat in reply to mamasmith11

As said some athletes get afib.

Binge drinking can also be a known trigger or cause. Binge drinking should be avoided period. Choice between health or binge.

Clareowenpearcy profile image
Clareowenpearcy in reply to BobD

So much more is known, and because of social media discussed now! I was 55 when I was diagnosed with Afib, I had probably had it for 35 years at least and not known or acknowledged it. It got caught as I was in Afib when my dr sent me for an ECG as part of an annual physical. (first one I ever had) the nurse asked if my heart always beat this fast and I said YES. Well that year (2010) I had 2 ablations and felt great. For the first time since I can remember I wasn't tired all the time. (lasted about 4years) I was always very physically active, low blood pressure and never sick I had just accepted the tiredness as caused by all my activities( 3 children by age 21) Lol Well 7 years later (62) it's time for another ablation as again my Afib got caught in the dr's office. Yes, looking back I've always had regular episodes sometimes 3-4 times daily. No, it never bothered me other than being really tired and just plain frustrated feeling so tired. I guess my coping skills are not as good now I'm older as they were when I was younger. I have honestly found sometimes what you don't know doesn't hurt you. Too much Knowledge is not always good.

mamasmith11 profile image
mamasmith11 in reply to Clareowenpearcy

Thank you for your advice and for sharing your story with me Clareowenpearcy.

I too have found that this time around my son is more tired and is sleeping quite a lot.

PS ... I hope you3rd ablation goes well.x

Clareowenpearcy profile image
Clareowenpearcy in reply to mamasmith11

Thank you!

Finvola profile image
Finvola

Hello mamasmith and welcome to the forum. Diagnosis is a dreadful shock for any of us but all the more so with a healthy teenager.

Sometimes in young people, there can be treatable reasons for heart rhythm disorders. When I was 15 I was diagnosed with 'palpitations' - it was the 1950's and little was known about heart rhythm disorders then. Investigations identified an overactive thyroid which was successfully treated and the heart trouble disappeared - for 50 years. Being athletic and binge drinking can trigger AF in people with a predisposition to it.

Are you sure that your son's AF is permanent? Paroxysmal AF can have lengthy episodes lasting days or weeks.

Bob's advice to see a good electrophysiologist (an EP) is your best way forward - privately if you can and have to. A consultation should cost on average £200 and you can transfer back to the NHS if you wish. That is the route which I took and it was the best thing I did. If you do not find an EP in your area on the AFA website, try phoning the hospitals around you and ask - many EP's don't register with the AFA.

Try not to worry too much. Once your son has seen the right physician, had a specific diagnosis and you can see the way forward, things do get much better. We have many 'youngsters' on this site, also athletes and cyclists. AF doesn't kill, it is a blasted nuisance and frightening to think 'it's my heart' but it is compatible with a good, full life.

Very best wishes to you and your son.

mamasmith11 profile image
mamasmith11

Hi Vinvola

Thank you for your support and advice, I've just been checking through all his letters from the hospital and he was diagnosed with atrial fibrillation, it doesn't say whether it is permanent or paroxysmal, I just thought it was permanent because when he suffered with it the first time it never got any better with medication (which they thought it would) and he needed cardioversion.

When he was initially tested they couldn't find anything wrong, except that he was anemic and he had suffered from glandular fever about a month before he took poorly so they put it down to a virus attacking his heart.

His last letter from the hospital does mention that if he does show any more signs of AF that they may start him on Flecainide and refer him to Newcastle for electrophysiological studies, it also mentions they may either re cardiovert him or send him for AF ablation.

Thanks again x

Clareowenpearcy profile image
Clareowenpearcy in reply to mamasmith11

Interesting! I also had glandular fever when I was 14yrs old. Swimming was always hard after. I wonder if that is when my Afib actually started & whether there is a connection between the two.

mamasmith11 profile image
mamasmith11 in reply to Clareowenpearcy

Yes, that is a bit of a coincidence and even more so is that my son had been swimming quite a bit both times before he took bad. x

If I was your nephew as difficult as it may be I would plan a break from training and alcohol until he has got more information and stopped the AF. Most of us on this Forum have had long experience of AF and the life changes necessary and believe you me early action is a no brainer! In my case, a changed lifestyle has been very beneficial and I wouldn't go back to my pre-AF habits.

mamasmith11 profile image
mamasmith11 in reply to

Thank you orchardworker, I totally agree with you and that's exactly what he is doing :) ... he is finding not training really difficult and I am worried as the last time he got very frustrated and down about this, not having any alcohol isn't a problem for him as this was the first time he had even tried it (he was celebrating his 18th & on a lads holiday) only wish he had stopped at home now. x

in reply to mamasmith11

Yes, do take care as AF can cause anxiety (although youth is definitely on his side here) and I understand it can be difficult to stop training as his seratonin/feel good levels can drop a lot. Maybe some professional early advice is required, costly yes, but gratefully paid if a problem is avoided.

mamasmith11 profile image
mamasmith11 in reply to

My son is so quiet and keeps things bottled up, we do try and get him to talk about how he's feeling but he is not very forthcoming.

Definitely need some more advice, as it's over 2 weeks until he sees his cardiologist again, who do you think it's best to see. x

in reply to mamasmith11

My preference would be to go to an experienced Naturopath.

mamasmith11 profile image
mamasmith11 in reply to

Thanks for that, going to have a look now. x

Clareowenpearcy profile image
Clareowenpearcy in reply to mamasmith11

I found COCONUT(natural potassium) water works really well & so fast too! Lots of times as an athlete you get dehydrated water just doesn't cut it. I live in. Erico 6 months of the year now & found this little trick by accident on the golf course.

Cold, Coconut water so refreshing and instant hydration. Helps to stop my Afib when excercing.

Clareowenpearcy profile image
Clareowenpearcy in reply to mamasmith11

Don't stop exercising completing. Moderate exercise is good. Afib can be frustrating and cause anxiety but chances of any real issues are low. Yes, the possibility of a stroke does increase especially with age but at your sons age ( if it definitely is just Afib) then a little discomfort is worth the benefits. Sunshine also helps me.

mamasmith11 profile image
mamasmith11

Thank you Clareowenpearcy, I will get him so coconut water to try :)

As for the exercising, he is not allowed to do any football, running or contact sports (so he is feeling really down about that) but he is allowed to go to the gym as long as he doesn't over do it. x

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