Afib/Atrial Flutter at 23 years old

So I was seen by A+E in November, after which a cardiac nurse concluded that she thought I had either Atrial Fibrillation or Atrial Flutter, after examining ECG recordings. After conducting my own research, I've learnt that both these conditions are fairly rare for my age group.

Is there anything I should be concerned with, given that it is quite rare for people my age to acquire such conditions? I am anxious that I have a heart defect that has never manifested symptoms until adulthood, could this be the case if my ECG showed instances of atrial fib/flutter?

Also, is there anyone my age who is willing to share their own experiences with this condition?

Thanks to all for the helpful advice on my last post!

30 Replies

  • I'm sorry to hear that you've been diagnosed with this. I too was diagnosed about 3 months ago and I am 27 I really don't have much experience with it so far all I know it's changed my life completely. All I can tell you is get yourself an EP to examine you and come up with a plan. Right now what's working for me is metropolol 25 mg once a day and flecainide as pill in a pocket. To me the worst thing of it all is my anxiety which I'm still trying to get under control if you wanna chat more just message me. Hope you feel better.

  • I agree get to see an EP cardiologist as soon as you can. Get some professional advice. Don't rely on your GP or a general cardiologist.

  • Hi there Micwal93. Welcome to the club. I was diagnosed with SVT at 21. It developed into Aflutter around 24. The ectopic beats continued daily from about 24, and they continued in frequency until a series of strong atrial fiberlation attacks around 27 led me to beg the ECardio to ablate my heart before I went mental. He agreed to ablate the flutter to start (easier of the ops). I'm about to go back in for my second ablation on the pulmonary veins and hopefully rid myself of the Afib curse for good. I'm now 31.

    In my opinion, you do get used to the anxiety it causes. Eventually you make friends with it.'ll always be annoying.

    If I had my time again, I'd be more proactive in getting to a solution quicker. The drugs help, but because we're young and this is generally a progressive condition, the drugs start to lose effect - it's also easier to cure afib in the earlier days, then it is in the later.

    Good things to know - it's not a death sentence. It does get easier to deal with mentally. But it will (in most cases) get worse unless you remain proactive about finding a resolution. If you need any tips in dealing with anything - or more questions - fire away!

  • Hi nopely, thank you for your excellent insight! I was wondering whether you could share your experiences when you were first diagnosed. Was there a single event that told you something was wrong or was it a gradual process? Do you get many ectopic beats? I seem to have ectopic beats, but it is strange in that I'm not certain they are missed/extra beats as it mainly happens when I have a gastrointestinal symptom such as an urge to burp. Its difficult having to wait so long to be seen on the NHS. I wish I could afford private medical insurance, but as a student funds are very limited as it is.

  • Sure mate. The first episode of SVT at 21 was like my heart was trying to get out of my chest. Emergency department and a double shot of adenosine later and I came off my 250bpm. It was scary. I had a number of other episodes in the weeks that followed, and slowly got used to it. I grew complacent with it, and it deteriorated into afib. My first hard afib attack in late 20's had me thinking I was a goner. Couldn't breathe, blacking out etc etc. I go through stages of good and bad.

    I have an afib ablation booked for later this month to hopefully rid myself of it for good.

    Keep pushing your way through the system mate. Solution is out there.

  • Interesting. I haven't had an especially high heart rate as of late, but I definitely notice my heart beat more, and I feel missed/extra beats a fair amount (but as I said I'm not sure whether that is mind or matter). It gets me very on edge, as if I'm on drugs - note: I haven't taken drugs for many years, and even then it was I did nothing harder than cannabis very rarely, so I don't think the condition is related. I've heard a lot of success stories with the ablations, but I keep thinking to myself that I'm far too young to have such a procedure, is there the possibility it could do more harm than good in young people?

  • The procedure comes with its own set of risks - but if you have a good operator, those risks are greatly acceptable if the alternative is a lifetime with persistent afib - imo. For me, the ectopics and afib runs mess with my blood pressure and make me feel stupid. I need a solution that is not a lifetime of drug dependency (which eventually run out anyway). Because we're young, our bodies heal quicker post op etc. AND we have got to it before it becomes worse in our later years etc.

    There are some free phone apps that can help you track your heart rate - they use your phone light to track your beat and can give you an indication of you're having irregular rythym. Also - check your CHADS score (Have a read) - you'll see that your risk of stroke is almost zero compared to a non afib person given age etc - that can give some peace of mind. If you want some double insurance, take an aspirin daily to keep your blood thin while you're waiting to see an Ecardio. All the best mate - I know how anxious that initially period is when waiting for answers

    Ps - everyone did drugs and too much alcohol when they were younger - while there is some evidence supporting excessive alcohol and afib, I think there is more of a chance it's from wifi and pesticides (tongue in cheek). I'm sure time will tell.

  • If I were given the option, I think I would definitely have the ablation procedure because the benefits clearly outweigh the risks in my eyes. Drugs in my opinion are fairly hazardous with all the side-effects etc. How do you mean the ectopics interfere with your blood pressure? Do you have too many of them? In many ways I believe the ectopics are almost as bad as the Aflutter episodes because it sometimes feels like they're going to initiate an episode, or that my heart is going to stop, horrible feeling. Were you bad with the anxiety of it, to start?

  • I was certainly anxious when I had my first few SVT's and even more so after the hard afib attacks. We're raised to believe that if your heart does anything irregular, we're going to die! But once you get a feel for the facts of heart arrythmia and that your heart is in good order with no congenital heart disease etc - you learn that this is a hinderance and not a death sentence. BUT it is important to get a proper diagnosis. So keep pushing for tests etc.

    I totally agree that the costant ectopics are more mentally draining than the fear that an afib attack brings on. It effects my brain function - whether it's an inefficient amount of blood is getting to my cells or the high blood pressure it seems to produce - I certainly don not think as clearly. It makes work a drain.

    Keep pushing for that diagnosis and learn to make the irregularities your friend (a friend you hate, but most get along with at a social gathering)

  • In truth, I am very worried about it, and its on my mind throughout most of the day. Its safe to say its inhibiting my life in a considerable way; it makes me feel light-headed, generally groggy and extremely fidgety. Plus, I don't even know when I'm having an attack; right now my heart rate is 88bpm, which is fast but still classed as normal, yet I feel kind of light-headed and I just get the sense that something isn't quite right. Its so frustrating, and its nice to interact with people who are/have gone through the same things. Hopefully the hospital will get their skates on a little bit and get me through these tests. The cardiac nurse said I'll have an appointment with a renowned electrocardiologist as well but I've had zero correspondence regarding that.

  • I have never done drugs. I have very rarely had too much to drink and even that was probably 15 years ago. I have persistent AF though!!!

  • Great advice nopely.

    Your point about drugs losing effect can not be over emphasised. The regular use of any, and all, drugs has this effect and is one of the reasons that I will refrain from the pharmasutical option for as long as I possibly can. I can't comprehend why people instantly dive for the pill bottle at the slightest hint of trouble. Chemical warfare should always be the very last, fallback, option.

  • Hi micwal93 and welcome to the mad world of AF - one that we all would rather not be in!!!

    The best way to describe it is that it is a roller coaster with its ups and downs in relation to the heart, other things physically and mentally. I see that you have only recently joined and don't know how much you have read about it on here. Definitely worthwhile searching and reading past posts.

    There are a number on here who are in their 20s and also some in their 30s and older who started with the afflictions or SVTs in their 20s so you are not alone.

    You will also learn that the various afflictions and the medicines affect different people quite differently and also can affect an individual quite differently from one day to the next.

    As said above it is important that you see an EP (Electrophysiologist) ASAP (weeks not necessarily days) to get a baseline and also specialist advice. EPs are cardiologists who have specialised in arithmyia and see people with them day in and day out.

    Don't worry about asking questions on here - you might think that they are silly or insignificant but they may help considerably!!!

  • Most of the above have covered most things but one point is that I would not take anything for granted. A nurse saying you might have AF or flutter does not inspire me as they show completely differently on an ECG. If you get another event my advice would be to see an elctrophysiologist who is an expert in electrical problems in the heart.

    Other points.

    Had you been drinking a lot before it happened? Binge drinking can bring on such attacks in otherwise healthy individuals. Do you indulge in endurance sports, another prime cause in younger people?

    Have you had any other tests on your heart? Ideally you should have an echo cardiogram to check for any physical abnormalities as well as blood tests for thyroid function and electrolytes. AF frequently appears in otherwise healthy hearts so please don't think you are doomed.

    Lastly please go to the AF Association main website and read all you can about AF as this will help you to understand it and avoid much of the anxiety which is can bring. Knowledge is power!

  • I am going top bring up a subject which seems to be a bit of a bit of a taboo on here and not for one minute am I suggesting that this includes you Micwal. But a night out these days for people of your age group very often includes recreational drugs, and I have a family member who was diagnosed with AF at a similar age. It took him a long time to admit to his parents that he had been a recreational user of cocaine (unfortunately it is as common as drink these days). He has eliminated drugs from his life, he still drinks at weekend and has no AF.

    I genuinely feel that the drug lifestyle of the current generation is going to make AF a lot more common than it is now!!

    Back to you Micwal and before you end up on medication for life I would implore you to try lifestyle changes first. Cutting out Caffeine, Stopping Binge drinking, If you do extreme sports maybe pegging it back a little. Good Luck and keep coming on here for support.

  • Well put BobD. I had the AF symptoms in my 20's but my GP told me to ignore it. I had a physical job and taught martial arts. It was not until another health issue put me in hospital, it was properly diagnosed in my early 30's. I am now past 60 still got it but still here. I do have multi conditions so not the the best benchmark to judge the outcome of AF from. But now is a good time to get your GP to look a littler harder even if it is to find all is okay at the end.

    Be Well

  • Hi, Well, I'm no expert but if I were you I would certainly ask my GP to refer me to a Consultant Cardiologist who specialises in abnormal heart rhythms. People on here use a lot of initials and I'm not sure what they stand for but EP seems to be the common one. I think it stands for electro something or other. I have heard of a similar condition to AF that affects younger people and it is something that can be managed, but does need medical expertise, so I seriously suggest you follow it up. Good luck. Tricia

  • EP = Electrophysiologist who is an cardiologist who has specialised in arithmyia and is allowed to perform ablations.

    There is a publication on the main AFA website that gives most of teh common abbreviations and a few others besides.

  • Thanks. It's a new 'world' to me - confusing and a bit scary, but I'm getting more used to it. Tricia

  • The real concern with these conditions is that they can easily set up your heart to develop a blood clot - leading to a stroke. This is true even if your heart rhythm irregularities are infrequent. The other major problem is that these conditions only become worse with time. You EP (electrophysioligist) will need to work with you to find an anticoagulant and a heart rate or heart rhythm control medication to moderate Afib and atrial flutter and prevent blood clots from forming. Or he/she may suggest going directly to one or more ablation procedures to rid yourself of these conditions, if all goes well. There is a lot of information on this site for you to peruse and become familiar with the many possibilities and their pros and cons.

  • Hi,

    I have just joined this forum, but have suffered with AF for 35 years now, diagnosed when very fit and with a physical job at the age of 24. I had been aware of strange heartbeats since my mid teens and thought everyone was like that. Discussed with my father and he sent me straight to the Doc, who in turn sent me straight to A&E without passing 'Go'. I had cardioversion as a starter in my journey and have had 4 repeats of the 'out of control' episode since then, with fleccainide being used each time, under supervision to sort me out. However, the AF is always there.

    I spent many years worrying about it. However, I have seen a very good cardiologist and we have discussed options and I felt I was too young to risk the side effects of ablation going wrong and have just tried to calm down and see it all in perspective since then. I take aspirin daily in the hope this will reduce my significant stroke risk and avoid too much alcohol, more than an espresso in the morning, long periods without food and some of the other more bizarre triggers I have identified over the years.

    In my personal experience, worry is the biggest enemy, as it makes the condition far worse. Perspective is everything and I try to worry as little as I can about the condition and just focus on marriage, parenthood, running my own business etc etc, all of which are far more important and great distractions too from the debilitating stress that can come from sitting listening to one's own heartbeat.....

    Good luck with it all and keep talking to others who've experienced it, as you'll learn so much. I wish this forum had been available in 1989 when mine first went off the scale!

  • Aspirin will not protect you from AF related stroke.

    See AFA website.

  • You should be on a anti coagulant not aspirin - see your EP

  • Aspirin was removed a treatment option for AF almost 2 years years ago. It does perform a function as an anti-platlet

  • If I read your post correctly you are now 59. Is the cardiologist saying that now you are too young for an ablation? There are many who are much younger than you having ablations.

    Also if you have seen a general cardiologist then you really ought to go and see an Electrophysiologist who is a cardiologist who has specialised in arithmyia and is dealing with them day in and day out and performs ablations.

  • Thanks to all. I'm 49 actually, but your posts are very helpful. It shows the importance of keeping on talking about it! I'll report back when I have news!

  • I am 4 years older than you and the eminent EP that I see feels that the possible side effects of Warfarin are to great at the moment. There is lots of great advice on here but some people can get a bit evangelistic about anti coagulants!! As always listen to the professionals!

  • Listen to the professionals but YOU have to make many of the decisions. Some of the real experts in AF (and other areas) can have diametrically opposed views (eg on anticoagulants).

    Also if you ask a closed question or put it in a way that the consultant believes you have made a decision then many of them will probably go along with you unless it's unsafe EVEN IF they believe there may be a better way.

  • I now have an appointment booked to see the Cardiologist, so we shall see what comes of it. Thanks for the nudge and the reality check.

  • I'm 21, just recently had an episode, heart was fluttering for hours and the anxiety went away so I decided to check my self into the ER. Heart rate was off rhythm and was at 160-200 bpm. Gave me meds through IV to help slow down heart rate, then they gave me propofol to knock me out and shock my heart. 1st try went good, rhythm went back to normal with normal heart rate. Been a couple days sense the episode, cut out caffeine and been doing great, taking ibuprofen once a day. Following up with a cardiologist in the next week or so. They ran blood tests and did an EKG and found nothing wrong and nothing genetically wrong, they're assuming now that it was stressed induced, bad electrical wiring in my heart, or just a fluke. Either way I'm not too worried about it, it's not a death sentence as someone else said, and is 100% cureable.

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