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AF Association
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Diagnosed afib at 27. Feel hopeless.

Hi all. After wearing a holter monitor for 24 hours I've been diagnosed with afib. The report came back saying my heart is working with a 3% burden. What does this mean?! (My gp had no idea) I haven't had a normal heart beat since December last year. One long constant episode. They have prescribed me only betablockers which only helps with an occasional fast heart rate not the fluttering and sent me on home like there's nothing else they can do. I live in the constant fear that my heart will stop or I wont wake up the next morning. Feel so hopeless that it brings me to tears sometimes. Im 6'2" 84kg. Not over weight. No history of heart issues in my family. Ive gone to gym to try "reset" the beat. Changed diet, low carbs and sugar, no alcohol or coffee. Visited a psychologist...

Is this my new normal? Am I going to have to accept this and give in? The thought terrifies me.

I live in Auckland New Zealand and don’t have access to the help you have in the UK.

Is anyone else in the same position or have advice on what to do next? Thanks for your time.

Regards

Patrick

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Welcome. Just a quick comment as no one else has responded. We know what it's like and sympathise. We have all had the diagnosis which feels that life will never be the same and that it's all downhill ahead. It isn't as impossible as it seems at first and the situation is not hopeless by any means. You will find quite a few younger people here and also people who have the same sort of problem. It's not a uniform condition - we are all different - but it's one that does enable progress to be made. And it's unlikely to be fatal. Don't despair - you'll find lots of support here.

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The first thing to understand is that AF will not kill you. It might feel like it sometimes though. I do understand your problem and it is important to get the best treatment possible. Your diagnosis and treatment is rather like 20 years ago in UK but you are young so should be able to work towards a better outcome. At the same time it is important to accept your AF and learn what you can and can't do. My first advice would be to look at the AFA website under patient information and see if there is an Electrophysiologist within travelling distance of you as these are the guys who should be treating you as they understand the electrical side of the heart whereas the ordinary cardiologists are more like plumbers.

There are also a great number of fact sheets on many aspect of AF on the main website which I suggest you read as knowledge is power.

Good luck and ask any specific question and we will try to answer.

Bob

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Hi Patrick

Firstly we understand, all of us, whether or not we're 27 or 67, we have all been there and the single most important thing this forum can do is just be here when you feel like you do.

Your heart is not going to stop, promise.... and you not going to die either ( at least not early and from AF, can't stop the old age one :) )

I am like you in constant AF, whether or not my body has got used to it, or whether or not it's a little less than yours I have no idea, as most of the time I don't even notice I have it.

What was the treatment agreed by the hospital who gave you the halter?, I wouldn't be surprised in they try a cardioversion on you first. Search the forum for many posts on that (also called a CV) They should not simply leave you on beta blockers without a course of treatment.

And you are very unlikely to be able to "reset" your heart in the gym, you will need something else than that. And of course for youngsters like you, fairly often the cause of AF is strenuous exercise, marathon runners and long distance cyclists etc seem to be a little prone to getting it, BUT it can be treated and reversed certainly when you are young.

Completely agree with Bob, try and get yourself in front of an EP, and learn all you can, and of course ask us anything, that's what we are here for.

Be well

Ian

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If you been given betablockers and sent home to get on with it, it does rather seem as if you're being fobbed off, but then I'm not familiar with the resources available to the NZ health services. No antiarrhythmics? No cardioversion? No ablation?

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Welcome! I can only echo what the others have already said, and reassure you that you are definitely not alone in this challenge with AFib! It can be very frightening and keep you up losing sleep while you try to absorb it all, and what the impact on your life will be. I think most here will tell you that stress can absolutely trigger an AF episode. So, although it seems impossible I would say to do whatever it is that works for you to try to relax and breathe as you take it all in and work with your doctors to make the best decisions for you and your unique experience with this condition.

When I was first diagnosed, I was young and was put on a Beta Blocker as well as a Calcium Channel Blocker. Since that time, I have continued on with the Beta Blocker and am no longer taking a Calcium Channel Blocker. Instead, I have found that an Anti-arrhythmic works well for me. Although I do have occasion episodes of AF that break through, for the most part I remain in normal sinus rhythm.

Definitely go to the AFA website to educate yourself on the condition and learn more about general treatment recommendations. I have found it to be a great resource for me personally.

As I said earlier, you are not alone in this! And, I couldn't be more thankful to have found my way to an incredible group of people to travel along this path with. Everyone is wonderful about answering questions and sharing their personal experiences. So, definitely don't be shy!

Best wishes! - KeL

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Hi Patrick,

Welcome to our community. I suspect the 3% burden refers to the 'PVC burden' i.e. the percentage of ectopics you are getting compared with the normal heartbeats. If so it is nothing to worry about. Premature ventricular contractions (PVCs), or ectopics to us, can cause 'left ventricle cardiomyopathy' if there are too many of them. The good news is that research shows that problems occur if this gets above 24% but rare cases have been found with problems as low as 10% - so you are quite safe at present!

Cyril.

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Hi again Patrick,

Regarding finding an electro physiologist, if you click on this link you will find the info you need. heartrhythmspecialists.org/ Just down the road in Hamilton (well about 125km) so it could have been a lot worse. Hope this helps.

Cyril

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Wow.. What an awesome website to stumble across. Thank you all for your calming advice.. hugely appreciated.

To Beancounter - There was no agreed upon treatment, no communication from the hospital at all. My report was sent to my GP who ran through it with me with her very limited knowledge. She mentioned that the mere fact that the report was sent directly to her was a sign that my condition is not really an issue at all. It certainly doesn’t feel that way sometimes... occasionally every 2nd or 3rd beat is a large "flop" and this can last days. Really wears me down as Im sure you all understand. My GP prescribed me beta blockers and Citalopram (antidepressant) which I took for 8 weeks and saw no difference. I take the beta blockers whenever my rhythm is too fast or each beat is too large.

It often feels as if there are a few different issues at any given point, the following describes my symptoms. I’m listing them as I haven’t come across anything quite like them online yet.

(When i say normal or large beat i mean i can either not really feel the beats or I can feel each and every THUMP!!)

- Normal rhythm and speed (60 - 70bpm) but each beat is far too large, every once in a while a beat is skipped = Take beta-blockers

- After walking 50m my rhythm kicks up a notch, sometimes above 100 bpm. Each beat too large while still skipping the occasional beat = take beta-blockers.

- Normal size and speed beat but in constant flutter = take...?

- Maybe it’s just my imagination but i occasionally feel small vibrations in my chest. Similar to the feeling when you partially block and artery or stand on a running water hose with your heel... this is of course great ammunition for my imagination to start doing what it does best...

This all started on a day I was quite hung over. I had been smoking 3 or 4 a day up until then too *face palm*

I do work in a highly stressfull office and the promotions I want only come with more stress.

Over these 10 months Ive found two things really help.. (Not including the beta blockers)

1. A painful back massage - it’s amazing the afib disappears for while...

2. Any "After hours activities" with the partner or anything along those lines is an instant cure..

Both of which are great.... but can’t be relied upon, at work for example.. There are lines I won’t cross! (Yet haha) :)

It seems as if anything that really distracts my mind helps, which leads me to believe that my afib is only kicks in when I start thinking about it..

What are all your thoughts? I look forward to the raft of responses!

Patrick

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You should research the posts on supplements and triggers. You might find something in these that could help. Once you are taking medication, it is hard to determine if the medication is helping or hindering any lifestyle changes that you make. I found eliminating all the medications which caused me to have frequent AF allowed me to do this and I am still off them. If I avoid certain triggers, I don't have AF. Avoiding them is the challenge but for the few times that I don't, I think three or four hours of AF is worth enduring to avoid the possible side effects of many medications. Delaying taking medication as long as I can is my goal for now. The EP specialist is OK with this. He said if AF does not hinder your desired lifestyle, then medication is not necessary and to come back to him when it does and he will try different medication. These medications are always changing so better ones may come along. Doctors have a difficult time corralling this AF challenge so if you can find a solution by watching the results of your normal activities, this may be your best option. Good luck.

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First of all, everyone's given very sensible advice, so big hugs. It really isn't fatal. It sounds weird, but you get used to your heart playing silly beggars once you know it won't kill you, it's surprising how much better you feel about it. We all feel it differently but I've heard it described as like a bag of frogs wrestling in your chest, which sounds about right!

To me it sounds as if stress is very much to blame, if relaxing things like massages and nights out give you relief. You would do well to see an EP as advised and try to get a better feel for your condition. And why not take up something like meditation or CBT (cognitive behavioural therapy)? It couldn't do any harm to try to relax... And take care, remember we're here if you need us.

Lis

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Not much I can add to the earlier comments really, except to express my sympathy that you have AFib at such a young age - is it me, or does there seem to have been more twenty somethings posting on here for advice lately?

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Hi Patrick,

Welcome to the club you never wanted to join. I commend you for making some immediate lifestyle changes! That is the key and you are so lucky that you are only 27 and have the chance to effect change that can help your AF become asymptomatic, hopefully for a very long time. The stress you describe can absolutely be a big part of the problem. Are you getting adequate sleep? Healthy eating, adequate exercise, adequate sleep, and what I like to call "contentment", a relaxed and happy state of being are the keys to reducing the burden of AF. Lis has good advice to try meditation and CBT. Acupuncture or reiki may also help you to make calm be your new normal. Wishing you all the best. Be well.

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Hi Grandma,

I particularly like your relaxed and happy state which you call 'contentment'. I am one of the extremely lucky ones in life who tends to be happy with their lot, whatever it is. I'm sure it’s the biggest reason that until inherited mutant genes gave me an arrhythmia problem, I rarely visited the doctor's surgery. I don't have everything I'd like (who has?) but I do have everything I need, and there are those in this world who can't say that. Contentment seems to me to depend on one’s state of mind, as those who don't have a lot appear to be content with a much lower level of necessities. Life is not always a bed of roses, but if (and when!) things go wrong I don’t fret or worry; I just look at the way it has turned out, and build on that. I know it is much easier said than done for a lot of folk, but worry really doesn’t help – in fact more often than not it makes things worse.

Cyril

p.s. I hope I haven’t offended anyone with this post

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Absolutely not Cyril, great words and wise advice. Thanks JanR

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Patrick

as all the others have said we understand how you feel. Very sensible advice from the posts above and the key I think is for you to get a a referral to an EP.

On reading your second post it sounds to me that you may be experiencing a lot of ectopic beats which at frequent times sets of the AF. If that is the case it is a quite common pattern as ectopic activity in the pulmonary veins is a frequent cause of AF - I understand.

If the above is the case then an ablation proceedure can eliminate the AF (no guarantee but a reasonable success rate)

I don't know your specific case but if the above assumptions are reasonably correct that could be the way forward for you. I'm no medical expert but have been there.

Get yourself to an EP and get some expert knowledgeable advice.

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hello patrick

welcome to our group. you are not alone i am 25 years old and i have afib. and every one here is nice and dont be afraid to ask.

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Hi Patrick, and welcome. Everybody has said everything, so I'll just send best wishes and tell you to keep in touch. Jan R

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Thank you to all. I have taken everything to heart (haha) and have come across some very useful stuff online. My panic easily washes away after understanding this isnt as bad as my imagination let it get. will keep in touch :)

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If you look on the thread 'how old were you when you first got afib' you will see lots of comments, some with comments about how they are fighting and in some cases winning the battle with Afib. lots of interesting ideas ; In my case it is: no booze, control my weight, no full strength coffee, walk 6 miles 3 times a week and don't eat wheat based food, sleep well and drink plenty of water. If I keep with these rules my heart settles down. Be of good heart - I've had this for 20 years and it ain't killed me -yet.

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