I'm only 39 and have just been diagnosed wi... - AF Association

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I'm only 39 and have just been diagnosed with AF.

Bahrain22
Bahrain22

I'm 39 and have been diagnosed as having AF. I've had it for 2.5 years, but it's only just been diagnosed- kept being told there was nothing wrong as it was hard to 'catch' on an ECG. It has got worse over the last 18 months and I was experiencing it constantly, it was very obvious on an ECG, so I went to a different doc and was instantly diagnosed.

My question is this... I'm 39, not overweight, drink moderately (a glass or 2 at the weekend), never smoked, I'm fit and healthy - I run and go to the gym 4 times a week. I'm not aware that anyone else in my family has AF - so im left wondering why I've got it?!!

Also, I've been put on 100mg per day of Tambocr Fecainide Acetate tablets. They have stopped the sensation and my readings were that 22% of all heart beats were PVCs and now on the medication, less than 1% are PVCs. Very pleasing, but being 39 - are these meds safe to take 'forever'? Anyone else bern kn them longterm? Any other people been diagnosed 'young' with this?

28 Replies
oldestnewest

Hi and welcome - sorry you are here but hope you find the forum useful, I certainly did and learned so much from informed, caring and supportive people.

The youngest people posting on this forum have been 18 - the age limit for joining so although you may think you are ‘too young’ to have AF - unfortunately it can happen at any age although I do think it can be more difficult to cope with when you are younger simply because we expect health and fitness in youth whereas us ‘wrinklies’ are more likely to expect some sort of bodily dysfunction.

Asking ‘why me’ is a pointless quest - we just don’t know - given you have ruled out all of the usual suspects and have discounted which have been factors linked to arrythmia.

Have you have your thyroid levels checked?

Answering what you can do about it a little easier :-

- avoid sugar especially any carbonated and sugary drinks and all artificial sweetners.

- ensure you are very well hydrated by drinking at least 8 glasses of unadulterated water every day.

- ensure you eat a healthy diet with lots of variety - eat the rainbow and aim for eating 30 different foods per week - if you don’t already.

- acute or chronic stress is one of the biggest triggers so relaxation is the counter to stress - do anything you enjoy; take up mindfulness, meditation, yoga, prayer, breathing exercises - anything that will aid relaxation.

- ensure you get plenty of sleep - 7-8 hours of good quality sleep per night. Sleep apnea is a known trigger for arrythmias so if you wake often in the night, feel sleepy during the day, are known to snore - see your doctor (after the pandemic has ended) about having a sleep test. Do everything you can to get that sleep.

- Exercise - recommended is 30 mins of exercise daily - walking is fine - which elevates your heart rate to an acceptable - ie comfortable for you to walk and talk. Too much exercising is as bad as too little so maybe try toning down your exercise regime and just see if that has an affect. If you get breathless it will be an extra burden on your heart.

- Listen to your body and tell your mind to shut up when it is telling you ‘should’ be able to do this or that and you ‘shouldn’t’ have this at 39 - sorry but you have so you will have to learn to deal with it, frustrating though it is.

- Check out the AFA information - Flapjack has a few pinned posts with links to relevant Information sheets - including various treatment options, drugs etc. Information is power when speaking to your doctors.

- Just try cutting out alcohol all together for 3-4 weeks to see if it makes any difference - some seem to be able to imbibe with impunity whilst others even one small, occasional drink of wine for celebrations causes a cascade affect.

We cannot give medical advice and you must ask your doctors about taking Flec long term but in my humble opinion, it wouldn’t be an option for me at your age. It’s a very powerful drug - taken occasionally as a PIP if it worked - maybe - but in your shoes - I would look for longer term options such as ablation.

- Try Lifestyle options first - nutrition, hydration, drug & alcohol & sugar abstinence, sleep, stress & exercise.

- Drugs

- Ablation

My experience was that having tried all of above, to no avail, after 13 years of experiencing very frequent, symptomatic episodes - I had a pacemaker fitted in preparation for last resort option - Pace and Ablate. It improved my QOL immediately and successfully stopped all but the odd, short and none symptomatic episode.

The moral - this is sometimes a marathon rather than a sprint to see what works for you.

Any questions - want to have a moan - need support from people who ‘get it’ don’t hesitate.

Best wishes CD.

Bahrain22
Bahrain22 in reply to CDreamer

Thank you for your reply and your advice - they are much appreciated. The 'why me' comment may suggest I'm fed up or thinking 'I shouldn't have this'. I was meaning more in terms of 'have I missed something'. I honestly think its lack of sleep and lots of stress. I have a very busy and all consuming job which I've been working up the career ladder towards for the past 13 years. I honestly think I've done this to myself by focusing too much time and energy on work, leading to too much stress over time. I am learning how to relax, which I find hard, but now realise how important this is.

I've had my thyroid checked many times, my mum has an underactive thyroid and I did wonder if this could have been passed to me, but each blood test comes back as clear.

Thanks again for your advice. Ablation scares the shit out of me, so I'll need to find out more and 'work up' to the idea of having it!

BobD
BobDVolunteer in reply to Bahrain22

Just to add to CDreamers post many people have successful ablations with zero issues but do be aware that it is a part of ongoing treatment and may need to be repeated. I had three before my AF went away and tust me when I say I am a devout coward so it is no big deal.

I would also emphasise the life style issues and add that a reduction in meat and processed food consumption has been shown to be as affective as any other treatments in many cases.

I think it also worth mentioning that to get AF you need a pre disposition which can be genetic or acquired . Over exercise is one possibility for acquisition especially endurance training which can enlarge the atrium stretching the pathways. Military fast jet pilots also show a disproportionate ratio of AF due to the work their hearts have to do in beating g forces.

As general rule I would have thought that at your age ablation absolutely is the right way forward if life style doesn't help. I also suggest that you go to AF Association website and read all you can so you can have meaningful discussions with the doctors treating you from a position of knowledge. There are links under pinned posts top right.

Bahrain22
Bahrain22 in reply to BobD

Thanks for your reply and your advice. I really appreciate it.

CDreamer
CDreamer in reply to Bahrain22

The lack of sleep + stress will do it. There’s a book called - When the body says NO. Worth a read because this is your body saying no so I would be inclined to see if you can work on those issues before considering ablation.

I’ve had 2 & although I was a fan, am less so these days but I had very rare consequences. For someone of your age & fitness it is worth considering if all lifestyle issues fail. Best wishes.

pusillanimous
pusillanimous in reply to BobD

My son who is a competitive canoeist was diagnosed at 35 and had an ablation, now 50, he has never had another attack, takes no medication, carries on with canoeing and has been told by his canoeing pal cardiologist that he is 'cured' - although I was under the impression you could not be cured! - he has regular check ups and must be predisposed, as myself and 3 sisters all have PAF (although we are obviously older). My cardiologist has told me that his next largest group of patients after 'oldies' are canoists and triathletes. I live in South Africa.

BobD
BobDVolunteer in reply to pusillanimous

As I repeatedly state all and any treatment is for quality of life not cure. I take my lead from the best Electrophysiologists in UK who seldom use the c word.

Thank you for your reply, I appreciate your support and advice.

Elaine1951
Elaine1951 in reply to Bahrain22

As someone who suffered from an over active thyroid in my late 30s succesfuloyctreatedceventually with meds and then getting AF in my 60s I feel sure they can be linked. An over active thyroid does produce a v fast heart rate in some. The proper checking and testing of thyroid is very variable and is often requires a specialist to look at the results. It’s not always straight forward.

My brother in law had v bad AF symptoms for a year and his thyroid was tested several times and pronounced normal. He insisted on seeing an endocrinologist who has finally diagnosed over active thyroid. AF symptoms now gone with no recurrence in 9 months . Treating the thyroid condition has however proved complex but that’s another story.

Difficult in these Covid days to get to see an endocrinologist but worth knowing that understanding test results of thyroid is not always for average gP.

I echo other advice here about exersize, . 4 x a week gym depending on what you’re doing there might be too much fir your body.

This site is so good and huge support and info provided.

Wishing you well. E

Bahrain22
Bahrain22 in reply to Elaine1951

Thank you for your reply, I appreciate your support and advice.

You say you have had your thyroid checked out. Unfortunately this often means just a TSH test rather than a full thyroid panel. Also do you know the actual figures? I was told when I was in my early thirties that my thyroid was "fine" only to find out 7 years later when diagnosed with hypothyroidism that the first test results were not fine at all but showed a thyroid starting to decline which should have been followed up with more tests every six months. 7 years of not feeling well . I was incandescent with rage! If you are female then I would be more suspicious about becoming hypothyroid as it does run in families. But men can get it too though it is less common in men. My husband has it and both his sisters.

Yes I'm female. Thank you for your reply, I appreciate your support and advice. I'll ask to see an endocrinologist when the Coronavirus situation has hopefully gone.

Try stopping tea and coffee and try drinking caffeine free drinks such as lemon and ginger instead. Try not eating or dinking after 7 p.m. Turn your blue screen settings down on your phone and PC in the evening. Have you got a fitbit or similar to measure your activity?

Bahrain22
Bahrain22 in reply to Ianc2

Yes I have a fitbit.i dont drink tea or coffee, and very rarely drink anything fizzy, so my caffeine intake is very low indeed.

Hidden
Hidden

Hi Bahrain 22, I sympathise , it’s a shock to find out that you have this peculiar and at times frightening affliction, but in a way I envy you - I now realise that I have had this for many years without diagnosis, but now that I am 71, I finally have an answer to many inexplicable and often very frightening occurrences. The worst ( from a very patronising medical person) was that I had an overactive imagination!

And how did I get my diagnosis( and my treasured ECG printout? Feeling weird one morning and for once taking my pulse ( usually 60 bpm, now 138), I sprinted up a steep hill from home to the cottage hospital, about half a mile . ( I took up running when I was 50 and did well at London Marathon last year , my 7th marathon so Af hasn’t killed me). This time I was checked over immediately by a reassuring nurse while the episode was ongoing instead of the usual 3 weeks or so later.When she said ‘You have atrial fibrillation’ it was a huge relief.

The worst consequence so far is that I will have to have my beautiful vigorous climbing fragrant rose Madame Alfred Carriere removed from the garden because it has vicious thorns and my thinned blood has got to be kept in my veins. The nurse was also a good listener and her guess was that I’d had Af since I was in my thirties - I wish I had known then, it would have spared me years of wondering and worrying. If you have it , it may be good to know that you do ; it’s still a horrible shock though and you have my sympathy.

Auriculaire
Auriculaire in reply to Hidden

Are you absolutely sure it's Mme Alfred Carrière? I have had two and they were practically thornless! It's true that rose scratches bleed far more profusely since I've been on Apixaban. Keep Mme AC and get a stout pair of pruning gauntlets. Monty Don had some really long ones for rose pruning the other week.

Bahrain22
Bahrain22 in reply to Hidden

Thank you for your reply, I appreciate your support and advice. It was a relief to be given an 'answer' as I knew something wasnt right, yet every doctor I saw told me everything was fine.

“Why have I got this “

Yes it’s a bummer and many on here including myself will have thought that.

Things are going well ,training ,getting fitter , feeling really good about yourself because you keep very fit, perhaps still getting pbs in your chosen sports , maybe the activities are possibly THE thing in your life .... then this issue pops up , not so bad at first , it goes away and you forget about it ,yet a few months later it comes back , again it goes away ... rinse repeat until you really start to look into it and it’s also becoming more frequent ....

yes , as someone on here recently told me “ your in the place you don’t really want to be “...

I’m still a relative newbie to this forum ( about a month ) yet it’s been a cross roads moment in my life , I’ve backed off a lot from how much running / swimming I was doing , shelved my pb ambitions and am grateful I can still do low HR runs .

I’m grateful I only have to take 50mg flecainide a day ( at the moment ) since last Friday ( and no thinners due to zero chard score ).... 3 nights now and no episodes, ( it has been every 3-5 nights prior to starting flecanide )... so hopefully i can go a week or longer without an episode , then see where to go from that point .

So “ why have I got this “ ....

my advice is to do everything you can to help yourself ( eat well , cut alcohol , no smoking etc etc , get tips on this site ) and begin to accept it / adjust your goals accordingly.

I didnt drink / smoke / eat super healthy / well hydrated / super fit blah blah blah yet it made no difference 😂😂

I’d also like to know like you , what happens if anything when your on this stuff for many years ...

My hope is that in 20 years , the answers will be better ,and the treatment be one easy operation / tablet / whatever ..

Maybe a micro robot that fixes your body from the inside without you noticing it .

You swallow the micro robot tablet , it’s programmed to do a certain job , then once it’s done out it comes in your stools.

Silly really but who knows , fantasising about future cures takes my mind off it , when I think about it .

Thank you for your reply, I appreciate your support and advice. Have you found any information about the effects of taking Flec long term?

Hi Bahrain22

No , I haven’t yet .

I had hoped to avoid medication , however my episodes were becoming far too frequent, so I felt I was running out of time to limit / stop episodes ( if that is even possible for me ).

I feared I was reaching the tipping point whereby i was closing in on it being persistent , so was soooo grateful to get in to see a private cardiologist ( just before they stopped taking in private patients due to the covid issue ).

I’m glad I have this flecanide , as I just want the episodes to become less frequent or even better - for them to stop .

Fingers and toes crossed I have no side effects , though I’m on the lowest dose to start .

Before seeing the cardio I was desperately experimenting cutting out caffeine / drinking extra water / taking magnesium tablets / drastically cutting back my training but nothing made a difference .... in fact since cutting back training ,the episodes became slightly more frequent ( you can imagine my frustration at that - as I thought that was the key )..

I’m just on the drug dependant roller coaster now ...

I would say though , that what you read in forums doesn’t represent everyone who takes these drugs ...

What you see minimal of ,are the people it worked on and who have no issues ( as why do they want to return to this forum when they just want to get on with their lives and forget about it as much as they can ).....

What you do certainly see much more of , are all the people these drugs do not work well on , as they want / need answers / help .

As someone told me “ this is the place you don’t want to be “ .... and that is so true .

I wish I didn’t have Afib and didn’t have to search the Internet forums like this .... but I did , so here I am “ in the place I don’t want to be “.....

It’s that thought which is why I think we don’t see enough success stories .

So my unqualified answer is that - this stuff has much more chance of being ok than not .

And I would say , more so if you have no other health issues , then less so the more issues you have .

Hence purely in my own circumstance I feel super healthy / beleive I am super healthy / perfect weight bmi etc etc , no other issues ... so I beleive if it’s going to work , then it should work on me ....

That’s where I derive my positivity from.

Now I need to leave this place where I’d rather not be :-)

Though , I do like being here if I can help someone even just a tiny bit .

Dave

Thank you Dave.

I like that, thank you. I am still at the 'head in hands' stage, I do.... correction.... used to do Endurance Cycling.

The journey ahead seems insurmountable at the moment, I am gradually gaining weight due to not being able to cycle until I can get this under wraps.

But as you said, positivity is the key .....

It certainly is. Talking to others is really helpful and gives a sense of understanding.

Have a look at 'the Haywire Heart' by Case, Mandrola MD and Zinn. Subtitled 'How too much exercise can kill you' It looks specifically at exercise addiction, particularly amongst cyclists and how this is linked to various heart problems. Lots of case studies and some useful advice.

Bahrain22
Bahrain22 in reply to Ianc2

Thank you for your reply, I appreciate your support and advice.

Hi, there are some extremely good videos on You Tube by Dr Sanjay Gupta at York Cardiology,. Also have a look at buying a Kardia device (Amazon). Used with your phone it delivers a short one lead ECG which you can download and send to your Dr (or to Kardia for basic analysis). I’ve found the Kardia reassuring to have as a back up. Poor sleep and stress definitely irritate my heart! Best wishes!

Bahrain22
Bahrain22 in reply to Lamadre

Thank you for your reply, I appreciate your support and advice.

Mine is triggered by dehydration, so use an electrolyte drink after training, you can get sugar free ones if you are vain about your teeth like I am!

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