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I’d like to hear from any “younger” AF sufferers

47 Replies

Hello again.

I’d be interested to hear from any younger af sufferers like myself. It would be interesting to see how many there are as I thought my age (37) was very young to suffer heart issues. I have however heard about a few below 40 sufferers on other forums and am interested to know how many users on this site there are that fit the bill.

If you could let me know how you’ve dealt with this in general, how often your bouts are, did you change lifestyle, have you had any treatment like mini maze or ablation or are you on meds etc I’d be very interested to hear from you.

Thanks

47 Replies
BobD profile image
BobDVolunteer

There are three groups of the younger generations who can "obtain" AF other than genetically and those are:-

Teanage binge drinkers- says it all.

Endurance athletes- over working the heart- expands the left atrium allowing stretched and broken pathways. Of this group cyclists seems to be the most common.

Fast jet pilots - over working the heart fighting high G. see above.

I think the youngest we have seen here who did not fit one of these profiles was 18 yeasr old so most likely a familial problem. Yes AF tends to be more prevalant with age but it is not soley a condition of older age.

in reply toBobD

I don’t seem to fit the bill of any of those categories and I don’t have a history of af in my family either. Strange. Thank you for the information Bob.

mjames1 profile image
mjames1

Afib can happen at any age and in many cases the reasons are unknown. This forum tends to skew older.

I had my first episode of afib in my 30's, had a cardioversion and didn't have another episode for ten years. No medications, no ablation, in fact ablation didn't exist back then. This pattern continued for over 40 years with no intervention other than a couple more cardioversions. Finally, when in my 70's I ended up on anti arrythmic's and then recently had an ablation.

Jim

in reply tomjames1

You seem like you were very lucky in some ways. My episodes came on and quickly became increasingly worse over a short period of time.

mjames1 profile image
mjames1 in reply to

Not sure how "lucky" because those that have a single episode of afib and get cardioverted aren't tracked very much, at least in the US. They also aren't represented much on forums like this because they don't need any support.

Jim

Teresa156 profile image
Teresa156

Hi RogueRhythm,

Like others have said, it’s not a condition that just affects older people. I was 39 when I had my first episode. I’ve no other comorbidities and now 18 years on, I get one episode a year.

I’m convinced that chronic stress at the time of the first onset was what triggered my afib. I went years between episodes, then just after Covid emerged, started having monthly episodes. I’ve since been on 1.25mg Bisoprolol and am currently back to yearly episodes. Afib doesn’t always beget afib. It hasn’t in my case.

The main changes I made are I no longer drink alcohol, I never go to sleep less than 3 hrs after food ( as digestion issues can trigger mine) no heavy meals and always make sure I stay hydrated and try and get as much sleep as possible.

No ablation ( yet).

in reply toTeresa156

Hi Teresa. You’re lucky if your episodes are only yearly. I too have made many changes to my lifestyle over the years and it seems to help. However my heart is still very sensitive at times, especially to stress and workload.

Teresa156 profile image
Teresa156 in reply to

Yes, stress can be a major factor. I do find I’m ‘tiptoeing’ around it though, all the time, if you know what I mean…I am constantly ‘aware’ of it lurking, so I feel I hold back on life now - do you too?. Life definitely changes after the diagnosis ( it did for me anyway) but I’m a natural worrier and this just adds to the anxiety. I’m always thinking ‘will it be today?’

I meant to add, my last two episodes, I’ve managed to end with a valsalva manoeuvre. They’re not supposed to stop Afib ( though apparently my episodes are a mixture of AF, AFlutter and Tachcardia). It has saved me taking a PIP ( which I hate taking). They’re also best done as soon as possible into an episode. I think my Afib is Vagally mediated, in that my vagal nerve/tone is a bit ‘off’ somewhere. But my cardiologist dismissed vagal Afib, as do many. I do believe it’s a ‘thing’ though.

It’s always worth trying, but they can be tricky and best done if you also double check with your Dr, though I admit, I didn’t. I’ve since told them and they’re fine with it. Not sure if it will always work though, but I’ll carry on until it doesn’t 😊 🤞

MummaSoap profile image
MummaSoap

Hi RogueRhythm

I’m in your camp for age bracket although I haven’t had any official diagnosis, only readings on my kardia device along with SVT (which has been confirmed).

So, on that basis, I’m unable to answer the majority of your other questions. However, I have dilated cardiomyopathy and heart failure and have been having some episodes that have even caused me to faint - I’m currently waiting for an implantable loop recorder to be fitted so that further investigations can begin. The only heart medication I’m currently taking is Ivabradine. I used to take metoprolol (beta blocker) and enalapril (ace inhibitor) but I seem to be very sensitive to medication and couldn’t tolerate them, even on the lowest doses.

Sorry if I’m over explaining - I’m never sure whether I give too much info 🙈

I hope that you can get answers to your questions and that your health improves.

Best wishes

Soap 🧼

in reply toMummaSoap

Thank you for the information and I hope you get your issues resolved. Technology is a good step in my opinion and I feel it will ultimately be what gives us the answers.

Good luck with getting to the bottom of your situation.

It’s an interesting question and one that features in Dr Sanjay Gupta’s video recently posted in Silky’s post. It’s not something I can add much to, but what surprised me was that between the age of 59, I worked in patient transport at our local hospital for around 6 years and much of the work involved trips to warfarin clinics and specialised physio centres for stroke clinics. I was diagnosed with lone persistent AF at the age of 68 and I can honestly say I had never heard of it! Amazingly, since then, it became apparent just how many of my contemporaries were affected by AF, most of whom would not contemplate any form of invasive therapy. Most are around my age, 77 next month, have persistent AF and appear to live relatively normal lives. With regards to treatments, I’ve had one CV, two ablations and with very occasional use of Flecainide, have mostly been in NSR since 2015. I wasn’t particularly aware of symptoms until after I was diagnosed so arguably, the early stages of acquiring knowledge did me more harm than good but I absolutely have no regrets regarding the treatment plan I followed. I don’t know what you know about Mini maze treatment because your bio is fairly brief but any form of Mini Maze treatment is very difficult to come by on the NHS. There are a very small handful people from the UK who have managed to acquire one, but there are a few who have had one privately and I have roused MummyLuv who is our resident UK expert on the subject. As I understand, the Mini Maze procedure is generally more successful for patients with persistent AF. For patients with Paroxysmal AF, an ablation is likely to be just as successful and the risk factor is considered to be far less than the risks associated with a Mini Maze procedure……hope this helps but much info about youngsters I’m afraid.

in reply to

Thanks for the in depth response flapjack. A lot of information to think about.

Rossdkemp profile image
Rossdkemp

Hi. Apols long reply alert. My first experience of AF was at 27/28. Either brought on by a stressful work event or playing football later that day I’m not entirely sure. Didn’t realise it was AF at the time as it had cleared by the time I got to hospital. (I passed out while playing football). My 2nd AF event I’m aware of was about a year later. I felt rough and my partner recognised my pulse was off. Had went into AF and it didn’t resolve itself so required a cardio version. I went on flecanide and bisoprolol. Was probably a year or two and the AF had started breaking through. Always an event that didn’t resolve itself and wasn’t aware of pill in the pocket dose so always ended up at hospital for them to cardiovert me. Eventually I had an ablation and came off meds but again after a football enduced event I went back in AF. I had a second ablation. The doctor said that the areas previously treated were fine so he just touched up. Shortly after that yet another football enduced event which I resolved through pill in pocket. At that point about 2 and a half years ago I decided to quit football. Never went back to the doctor and stayed off meds. Haven’t had an event since (longest gap since first event) although get the odd ectopic (have done since first ablation). I figured in my non medical logic that my heart reaches a critical BPM through intense exercise (regular sprints) and then gives in to AF. I now do lots of walking (20km+ a day) and resistance training as an alternative. I track my health stats through Apple Watch and would consider myself fairly healthy at 38 (vo2 max touching the 50s and resting heart rate in the low 50s). I suspect based on the knowledge from this site that my AF will develop over time. Hoping to carry on as long as I am whilst technology advances. Standard triggers seem to have no impact on my AF I.e alcohol, caffeine, sugar, sleep. Seems to be purely intense exercise enduced although I am also quite a stress prone person. No AF family history. Worth noting I have done intense exercise from an early age all the way up to AF playing a number of sports to a fairly high level (basketball, badminton, tennis, and football). I just try now to enjoy each day that my heart works in rhythm. I miss the competitive sports so now just compete against my PBs (and AF). Hopefully useful and happy to answer any further questions.

in reply toRossdkemp

Thanks for the response Ross. Some interesting information to think about.

OzJames profile image
OzJames

Hi there it can be quite daunting to think you’ve got to deal with heart issues at a young age. Firstly maybe on your profile tell us your story.

I was 35 when first diagnosed after drinking too much till 1am then going for a surf and run at 7am.. boom the heart started hopping. I went to cardiologist and he gave me a bunch of tablets for the AF, can’t remember what they were. At the time I went back to training and my heart converted back into normal rhythm. This occurred roughly every 4 or 5 years and same solution. Each time I went to a Cardiologist who prescribed drugs and each time I self converted. Now I don’t advocate that to everyone as you may not be as lucky as me. Fast forward 30 years and now I’ve had ti be cardioverted to get back into rythem a few times in the last 14 months. I’m on some drugs and now have pretty much given up my triggers alcohol caffeine and reduced stress as much as possible. Apparently the older we get the harder it is to maintain a longer sinus that I had previously enjoyed. I now at 65 take magnesium, CoQ10 and train to 80% of my max heart rate so as to not get heart to excited. Hope that helps remove the fear as I’ve had a great last 30 years living a normal life with AF

in reply toOzJames

Thanks ozjames. I think mine is very much stress and sleep related. Im able to exert myself during exercise but similar to you I try to keep my heart as low as I can. Some days are better than others and I feel like I’ve got a good grasp of which days I can push a little harder. I can usually feel when my heart is sensitive and adjust accordingly.

OzJames profile image
OzJames in reply to

I figure the heart is a muscle and we need to keep it strong through exercise but within limits. For my age my max rate should be around 140 but I tend to keep it under that. Also as BobOz said check your blood levels. My VitD was also down it’s now better around 80 and magnesium was down and now normal and CoQ10 was quite low and still now at bottom of normal range and that’s after 8 months of supplements. CoQ10 is essential for healthy heart and our bodies don’t synthesise it’s as well as we get older. I’d love to do a survey of AF people and their CoQ10 levels it could be the missing causal link of AF in some of the population

in reply toOzJames

I will have to research coq10. Thanks for the tip.

Fullofheart profile image
Fullofheart

I'm 48 now but was 29 when AF started. I don't fit any of the categories BobD has suggested.

in reply toFullofheart

do you have any inclination as to why you think it started?

Fullofheart profile image
Fullofheart in reply to

No but lots of people in my wider family have cardiomyopathy. A few with AF.

Bell50 profile image
Bell50

I was 36 when I now know was my first episode I was put on beta blockers for a few weeks had another ecg was then told I was fine and was took off of them again this happened again a few years later and same thing happened again on beta blockers then did another ecg this happened one more time after, then in 2021 my doctor decided I needed to see a cardiologist. I then had two cardioversions and I have now had two ablations and am hoping to come off of my meds by next March when I next see my EP and I am now 60

in reply toBell50

When did you have your last ablation? I’m not on meds anymore myself but coming off was challenging.

Bell50 profile image
Bell50 in reply to

RogueRhythm I had my second ablation in June my EP took me off of flecanide in august and reduced my beta blocker in September he has also said that if I remain Afib free by December I can come off of the Apixaban then I see him in March where he is hoping to get me off of the beta blocker completely so all I will be left with is the statin which I don’t think I will get off of that now.

Tomred profile image
Tomred

HI Roguerhythm, mine started around about age 30 ish, im now 63 , but suspect without proof that i may have had it before but was symptonless.

in reply toTomred

I also think I may have had it for a very long time but the symptoms were not there. I’m convinced they gradually got worse over time until I finally noticed what was happening.

Achant1 profile image
Achant1

Hello, I am 45, had the tiniest snippets of Af when anxious from age 19 onwards, managed to control this with deep breathing up until I was 38 when my Af really took of in the resus unit of my local hospital up to 300bpm, had my first ablation early 2017, then had three years drug free until 2020 when it struck again. Had another ablation in 2021 for Af, when coming off the flecainide I was having many ectopics, pvcs, which I am still having, I now can’t take flec as my ventricles are borderline enlarged, I’m waiting for my third ablation for pvcs 👌🏻 I have delt with Af by trying not to let it rule my life, I’ve actually had my third daughter since my diagnosis, moved house, built extensions and moved on with my life. One thing that really helped me was going for therapy and working on my mental state.

in reply toAchant1

Hi achant.

so would you say your af is caused by or a symptom of anxiety?

Achant1 profile image
Achant1 in reply to

No not all, I think you’re either predisposed to Af, or you’re not. It’s an ugly beast, but one you have to deal with. You will get through this and you will find some great people on here and in real life.

RatPurdy profile image
RatPurdy

Hello, Rogue ....

Yes, been there and done that!

A 27 year old, thumping through the forest on a geological review when my heart went. I was sure I was having a heart attack, but so what , I was 3 hours into the bush, so no options (pre-cell phone, of course). Managed to get out several hours later, off to hospital next day. "No problems", was the considered medical opinion.

Another attack a couple of years later ... same response from the medics. And on and on it went until I was finally diagnosed when attacks became frequent in my 70s.

Anyway, no family history, no specific triggers, (coffee seems to help, but I have stopped alcohol), used to exercise intensely (until knee blew out) and that didn't start things off either. So you have my sympathy. I wish I cld offer you a solution, or at least a reason for early initiation, but that seems to be part of the game.

Best, RatPurdy

in reply toRatPurdy

Hi ratpurdy.

Thanks for the response.

Interesting that you note coffee seems to help? Can you explain how? Coffee is a real nightmare for me. I haven’t drunk it for years as it’s a guaranteed trigger.

RatPurdy profile image
RatPurdy in reply to

Rogue ...

Like everything else connected to AF, the reasons for almost all my heart rhythms are obscure. I don't know why coffee helps, but my bouts are frequently paroxysmal and start just after midnight. Coffee at 1030 am seems to kick the rhythm back into NSR.

I've always assumed this is a response to increased electro activity within the vein connections.

RatPurdy

OzJames profile image
OzJames in reply toRatPurdy

Rat interesting about your coffee helping, for me it was short sprints that got me back into sinus so maybe it was the same sudden change in electrical activity that did the trick about 7 times over 30 years

in reply toOzJames

Does it still work now?

OzJames profile image
OzJames in reply to

I decided not to try the sprints last September as we were heading overseas a week later I guess at 65 I didn’t want to spoil holiday for my wife in case something went wrong so i decided on the drug route apixaban , Flecainide and metoprolol for a few weeks then did cardioversion when we got back then stayed on drugs for another 4 weeks then stopped. The drugs didn’t stop the AF but the HR and rhythm was nearly normal. It actually had the ECG operator thinking I was in Sinus. Then the cardiologist explain I was in AF so booked in the CV.

I will alert you that I know of another who was in AF and tried to exercise it back into sinus only to end up with atrial flutter instead!

in reply toOzJames

I wish I could do it but when I’m in af I don’t have any energy at all. I’m very symptomatic. If I tried it I wouldn’t like to say what would happen.

OzJames profile image
OzJames in reply to

I get it mine was not that high when in AF maybe 90-130. You’re doing the right thing which is asking questions and remember what works for one may not work for another. I’ve always believed listen to your body and exercise is good but don’t go more than 80% of max rate. A brisk walk every day for 30-40mins might be enough for the first few months…. don’t push it. Look into your magnesium potassium and CoQ10 levels and make sure Vitd levels are ok

in reply toOzJames

Good advice. I already take an electrolyte formula. Is this similar to coq10?

OzJames profile image
OzJames in reply to

Be careful as some electrolyte drinks have added sugar which I try to avoid. I stick to whole fruits. Here is overview from Mayo on importance of CoQ10. I don’t believe enough is spoken about this

mayoclinic.org/drugs-supple....

in reply toOzJames

Thanks oz. I’ll give that a look. I don’t use an electrolyte drink. I have liquid that just contains potassium, magnesium and sodium and I add this to a litre of water.

OzJames profile image
OzJames in reply to

Perfect… and next time you do yr bloods you can get everything we discussed measured so you have a baseline. You’ll prob have to pay a little extra for mag and CoQ10

in reply toOzJames

Are you in the US by any chance?

OzJames profile image
OzJames in reply to

Sydney Australia

in reply toRatPurdy

That’s a very interesting theory. I guess that is the reason a cardio version works so it makes perfect sense.

Florence-Nightingale profile image
Florence-Nightingale in reply to

Although I’m 75yrs young y AF started 20years ago during those early investigation both my EP and Cardiologist advised me to cut out all caffeine from my diet,which I did and still do and for me things did improve.

ozziebob profile image
ozziebob

Please consider the importance of Vitamin D in reducing inflammation and various arrhythmias. This applies to young and old alike, and it's important to know your current base level of serum Vitamin D by requesting a blood test from your GP. This is important because current outdated UK NICE guidelines are way below the higher levels recommended by current research from all other major countries.

As I understand it, after a deficiency was implicated at the beginning of my AF, and after my own research into available information, I am trying to maintain a Vitamin D level of at least 100 nmol/L.

Good luck.

Hi, RR! So sorry to see you have left the forum, at least for now... You, young ones, demonstrate (my own opinion) brilliant intelligence, which is at least 30% above what my generation (1950-ies) has had. Maybe as the consequence of a training from the early age, with all the computer games and modern means of communication. I hope that you will come back, that Elli will be allowed to contribute again, that some other may join you, so that we may build here a team of potent young AF-sufferers. Cheers! P.

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