Hi everyone...just been diagnosed wit... - Atrial Fibrillati...

Atrial Fibrillation Support

30,955 members36,548 posts

Hi everyone...just been diagnosed with AF, 44 years old and at a total loss.

Uttled00 profile image
17 Replies

Up until 3 weeks ago life was pretty normal, although I had not been 100% since Xmas when I had a throat infection, fever, cold, etc, etc. I just put it down to stress of my job and losing a close family relative.

Anyway, I was rushed to A&E with a pulse date in excess of 140 and diagnosed with Paroxysmal AF. Was put on aspirin and Bisoprolol initially, this was changed to 80mg of Sotalol twice a day following a visit to the cardiologist. He confirmed the diagnosis with ECG and echocardiogram . Fortunately there is no evidence of heart disease etc and I have had a full blood analysis which shows no Hyperthroidism etc.

This is all great news but i feel absolutely rubbish, each day is a struggle to do anything. I know it's early doors and having read many articles on this forum I appreciate that people have suffered for many years with AF but I would just like some advise on how people felt in the early stages of diagnosis and if anyone has found a correlation between certain foods and on set of Afib.

Many thanks

Dave

Written by
Uttled00 profile image
Uttled00
To view profiles and participate in discussions please or .
Read more about...
17 Replies
Jomack profile image
Jomack

Uttled00...welcome I'm new to the forum as well and was diagnosed the same as you and I'm 37. I have tried 3 different meds now and none are working for me. I get up to 6 AF attacks a day and the worse attack lasted 2and a half days at 220bpm I was sooooo ill! I've been ref to a surgeon now for an ablation. It's a horrible condition I'm shattered everyday and sleep all night and have to have a day time nap to recharge my batteries! :0)

Hi Dave, I was pretty much the same as you, ended up in a coronary ward where they tried me on different drugs until they found the one that worked for me. Then I was pretty well back to normal but had to have an ablation after 2 years to get off the drugs which were affecting my memory, big time. I was 53. Now got an arrhythmia back and once again I've had to try 4 different drugs to get the one for me (different one this time because my memory's already bad enough thanks without any help!).

Anyhow, my point is, and of course it may be just me, but I just wonder how many symptoms of feeling bad are the drugs and not the condition and it might be worth going for something different if you have the option. I asked my cardio/EP direct as the GP's can't prescribe the drugs I need (rhythm control). I got the prescription by contacting his secretary direct, just phoned the hospital and asked for her/him.

People definitely have a correlation between foods and arrhythmias, but with me it's just eating full stop, 15 minutes later I get the wobbles. But not at the moment because drugs have stopped it completely.

Also lying on your left side may make things worse. Try sleeping on your right, or possibly your back if you're lucky. Again, my drugs have stopped this problem as well (so far anyhow).

Learn about AF, on here, wherever, because it makes a big difference I think and makes it less scary and more controllable.

Hope you get to feel better soon

Koll

Trilby8 profile image
Trilby8 in reply to

Morning Koll - just come across your comment ' but with me it's eating full stop' , ' but not at the moment because the drugs have stopped it completely '. This is just the post I've been looking for - I've had Lone PAF for 18m now triggered by exercise then gulping food straight after along with post viral and a build up of a reactionary depression from major family illness and bereavement - so as you'll see the odds have been against me.

Had Sotalol never again - had Diltiazem twice daily never again - now on Diltiazem 60mg at night not sure if it's helping or hindering - just been given Flecanide PIP not taken as yet.

Getting increasingly frustrated as I go through really settled periods where I can eat and drink carefully avoiding caffeine alcohol iced drinks and dry bulky foods and feel back in the the world around me then wham something upsets my gastric equilibrium again and I'm back to palpitations and then potentially fast brief runs of AF at the slightest nudge - a cool drink sitting certain positions after food bending- I also have the feeling I need to clear my throat from mucus ?!

Other than to off load Koll (sorry) could you tell me which drug you say has stopped this completely please ? Many thanks Cathy

in reply to Trilby8

Well there were two Cathy. First was 10 years ago when I had very bad AF round the clock. They tried various drugs but the one that worked was trade name Arythmol (Propafenone). By the way, since then I have tried trade name Accord (also Propafenone) and it made me severely depressed within 3 days. Tried it twice, same effect, but Arythmol (same drug apparently) does make me feel forgetful, but definitely no depression. Took it for 2-3 years and had no AF. I had an ablation to get off this drug because the bad memory was affecting my work. The ablation worked 100% for 8 years.

This time round I don't have AF, I have something else happening, loads of ectopics for a start. Again, the EP tried 3 or 4 drugs and the one that worked for me this time is Disopyramide. But you don't see it mentioned much, so probably not for AF I guess, seems to be listed more for ventricular stuff, but I don't know.

Good luck finding the right one. There has to be one surely???

Koll

Timmo50 profile image
Timmo50

Hi Dave,

I too was 44 when diagnosed and it was an awful time in my life. My son was 2 and a half and I was worried that I might not see his third birthday. But like you I found out that I had no underlying heart disease and I made a pledge to myself that it wasnt going to beat me, I kept going to work (although there were problems with that at times) and I kept walking up hills (in fact excercise was often a good way of getting back into rhythm). My main issue was getting people to understand that sometimes I felt OK but next minute could be feeling like poo, and I still struggle with that to this day!!!

I am now 51 and have had 4 ablations (3 radio frequency and 1 cryo). I feel a lot better since the fourth in November and am finally hoping that I can be med free. But during those seven years I have done everything that I would have done, Ive still gone on holiday, still had a pint with the lads every now and then ( but sensibly!!), and have kept my job (just!!).

I hope you are soon feeling better and like Koll says sometimes the drugs make you feel worse, So keep in contact with your Cardiologist and tell him that you feel crap on the Solatol.

Good luck

Lal531 profile image
Lal531

Hello Dave, there are similarities between your PAF onset and my own. Looking at your meds, you appear to have a potassium shortage which can bring on an episode. I keep it simple by having a banana everyday so that I am having my daily potassium also I keep well hydrated with water / fluids, keeping coffee to 3 cups max. Your tiredness / fatigue will take a few weeks to abate. With regards to certain foods, I haven't personally experienced any adverse effects with anything. Suffice to say I eat as much fresh produce as possible. If you feel an episode of murmurs / tremors try having a dirnk of cold water and resting for 10 mins with your eyes closed.

Cheers

Anth

Japaholic profile image
Japaholic

Dave, your only a year older than me. Some here are in their twenties. I feel your pain as last summer when I found this forum I thought I was going to die. Honestly I was at my wits end. I got ill a few weeks before emigrating and thought I wouldn't make it. But I'm here now, living in Japan.

The Sotalol works for me, I'm still having the odd episode but it's not as bad as when I was hospitalised in the UK thankfully.

Chin up fella, your not on your own and there are a lot of knowledgable people here.

I have Paroxysmal AF too. I first had an episode in 2005 after seeing the dentist, it was something to do with the adrenalin in the injection for a filling. Although my med notes said I had an episode in 1998 which was ticked off as a panic attack at the time. I do feel rubbish at times and my body does slow down as if I am trying to walk against the wind in a wind tunnel. side effects from meds are the pits at time but looking at the bigger picture it helps with AF, I have only ever taken Sotalol though. Oddly the worst thing I have ever taken is when I have been abroad and its happened on every trip, and it happens to be peppermint tea. I was drinking by the gallon when abroad because ordinary tea is really not very good abroad and I don't drink alcohol. It increased my warfaren INR and puts me in an AF episode. I was shocked when I realised. Good luck with your new journey and don't be hard on yourself.

Sending hugs... It is awful when you're first diagnosed, I think some of the way you feel is the shock of the diagnosis and the subsequent worry. But the kind people here have made me realise it's a condition you can live with, and you will, they just need to work out the right meds. I steer clear of caffeine and only drink in moderation (max of a glass, on weekend nights). Chocolate also makes my heart a bit wobbly but not in small doses and other people will tell you other things that can set it off. Bananas seem to be good for you, I eat one a day, and take CoQ10 tablets which help with the energy. Best of luck - anything you want to know, people here are always happy to help :)

Lis

dedeottie profile image
dedeottie

It took me ages to realise that other A.F. sufferers were taking medication or having ablation with the aim of at least temporarily getting rid of the symptoms, I thought they were only to relieve the symptoms so I didn't think it was worth the risk of taking the meds. In the end I realised how compromised my quality of. Life was, saw an E.P. and am now on meds that control it for at least 95%of the time. I have totally got my life back. If they stop working I will have an ablation and go from there. If you are offered an ablation I would take the opportunity. Hang on in there and it will all get better. I can promise you that. We have all been where you are now. I started with it in my mid 40s and a lot of people are younger than that. Good luck.x

jondeanp profile image
jondeanp

Dave, I was 44 when i had a episode in December last year. My HR was up in the 150's and lasted for 5 days before i was referred to hospital and diagnosed with AF. At this point i think my HR had dropped anyway into the 70's (my normal RHR is mid 50's) I was prescribed bisoprolol and sent away to have an echogardiogram and 24Hr ECG.

I had these done 5 days later and reconfirmed i had AF

I'm now on Warfarin as well as the bisprolol awaiting a cardioversion

I generally don't feel like i'm suffering too much, most days i don't have any significant episodes that i can feel although i know that it's still there. I do get the odd occasion where i feel tired, but I've got 2 young boys (6 & 3) so i think they are the reason for my tiredness rather than the AF

I used to run a lot but the AF has stopped this for the moment. I attempted a small jog last month and i did feel like my energy levels degraded and when i got back my heart was in full blown "wobble" although the HR wasnt significantly high

The only thing food wise that "may" have had an affect is caffeine. I've given this up since Decemebr. Oh and i'm restricted to 2 units of alcohol while on the warfarin which i'm sticking to as i don't want to prolong getting the cardioversion booked

I'm just hoping that my cardioversion will do some good

AndyDuk profile image
AndyDuk

HI Dave - Some people find (my father in particular) that spicy food can bring on an AF episode. It's not the same for me, but I tend to go for tasty, rather than mind blowing hot !!! :-) . I'm 42 and have had AF now for over 3 years and can sympathise on how you feel. Personally, drinking more water, keeping an healthy diet, avoiding alcohol, caffeine, has kept my episodes manageable . I also find that AF can be triggered for me after an IBS attack. As already mentioned Bananas are good, I think its down the potassium in them. I tend to avoid too many processed foods, and have cut down on the gluten in my diet (but thats just to help eliminate IBS). In the early stages I found it hard and worked part time (9.30 till 2.30) every day, then came home and slept for a couple of hours. That eased up after my cardio version though. I'm now looking forward (if its the right word!) to my second catheter ablation. I now have a AliceECG monitor for my iPhone 5 and find if I'm feeling rough, I just check it out and see how I'm doing. If its AF I put my feet up for 30mins and anything else I dose myself up.. Lastly there appears to be a link between feeling down and beta blockers/AF.. Don't be afraid to discuss this with your doctor. I kept off anti-depressants (normal man pride) for a year before I started to take them and it has made a difference. If you feel positive, then you can deal with this, and the treatment. Its the best way forward :-) ... I hope that helps. All the Best..

G'day Dave,

Straight to the point - I initially thought the cause of my paroxysmal AF was stress - and in a sense it was - stress is so wildly different in different people. In retro - I had 2 and half years of massive palpitations - however - in that time I carried my mobile phone in my left hand shirt pocket - roughly over the heart. I now have learned about electro sensitivity. After diagnosis of AF I was sent home from hospital and was totally crap. Couldn't do a thing - timeline - was about 7 - 10 days after being admitted to hospital. Tried walking and it was taking me 30 to 40 minutes to walk a distance that I can now do in 10 minutes. So that covers the cause. After about 8 weeks went back to work. Gradually improved more and more with the passing of each week. Then around 15 months after diagnosis I related the onset of an AF event to digestive issues. Bloating - massive bloating, painful, - which I could feel working on the heart, burping, very loud intestinal gurgling, and diahorrea. Went for tests for Coeliac Disease and IBS - all clear. So I consulted a nutrionist about diet and took her advice. For the last 3 years or so I've been Gluten free and also embraced FODMAPS diet (suggest you Google it) and now I can't remember when I last had an AF event. This is very much an over simplification of my journey - apart from diets it has been also a process of trial and error with food - and still is ! It seems the culprit is a dysfunctional vagal nerve - which - controls both heart and digestive system. I was 65 when diagnosed after a lifetime of being totally healthy apart from minor DIY mishaps and the removal of right knee cartilidge. No other problems with heart either. I'm now coming up to 70. Are you on Warfarin ? Do recommend you try and research as much as possible and learn as much as possible on this bloody mongrel condition. But you will improve - you will.

Good luck,

Aussie John

Uttled00 profile image
Uttled00

Thank you to everyone that has replied. Reading your comments has been a great help and comfort. I guess before AF any illness I have had usually cleared up in a few days and it's the realisation that this is a mid/long term journey and not to expect miracle overnight.

I have tried cutting out dairy for the past few days and there has been a definite improvement in my energy levels and general well being. Having said that it could just be the meds settling down.

Thanks again for your support and kind words of encouragement.

Dave

Dottilind profile image
Dottilind

Hi I have now put mine to stress. I had the first episode three years ago when my hubby was diagnosed with lung cancer and I had chest pains . taken to hospital and told nothing wrong with heart. All went quiet and then I lost him two and half years ago I more chest pains, hospitalised again and nothing found. They then gave me angogram and nothing found there so they decide I had AF and put me on warfarin, that was in Feb this year as I was moving house and doing all myself as at 72 I was still very fit, I say was as now I have just had another epoisode , what with the warfarin causing bleed and worrying about hotn water going of etc etc etc. I dont feel I will be right again unless I calm down and not worry. There are a few people on here who will tell you what has caused their Af episodes. take care

rich101 profile image
rich101

I'm 31 now, had my first episode around 10 years ago - that may make u feel a little better.

To be honest when I was first diagnosed, it didn't really bother me, but I was young, and didn't let things bother me.its as I've got older that I think about things more, have two young children and naturally worry all the time.

I can completely link it to digestive issues, I also suffer with ulcerative colitis, which thankfully is well controlled at the moment.

One thing I have noticed is any acid reflux has a massive influence on AFIB, I have just started tabs for it and feel better for it.

Think the acid, bloating affects the vagus nerve.

I have bisoprolol as a pill in pocket approach, and seeing the ep soon to discuss future treatments.

All the best

Japaholic profile image
Japaholic

Dave, havent read through all your replies as I wanted to reply to you personally. I am the same age as you are, was diagnosed last year (aged 43) and really felt my world crash down. I thought I wouldnt see my children grow up, basically I was dead already and that it was just a matter of time.

You can make positive changes that will help keep the condition under control. For me the easiest was to stop drinking alcohol and to switch to decaf tea and coffee both of which I found made my condition worse.

I try to keep active, which is difficult sometimes. I was taking sotalol for a year and it was really hard, I gained weight as I couldnt do any cardio exercise as my heart rate never increased. So, after five minutes Id be gasping like a 60 a day grandad.

BUT - i keep active, brisk walks, take the stairs instead of the lift, try to keep my hand in at the martial arts I practice. Thats important too.

I have acupuncture weekly, it helps me relax and keeps the anxiety at bay. Worrying about AF is a shore fire way to get more AF more quickly.

The Tibetan book of living and dying says "dont try and run from your pain for you will only create more pain, simply be with it"

If it makes any sense at all I treat my AF like this. I know its not going to go away, all I can do is manage it. Try to be with it. Be its master, not its servant.

You will always find advice here, some good, some bad. Go with the majority. You will find some opinions that you disagree with and some with whom you agree. They are all made to help you and come from an honest heart by the author.

The best thing about this forum is that black, white, gay, straight, regardless of religion we are all united by this condition. it makes us family so to speak.

The best advice I can give you at the moment is to study AF, study the heart, read as many academic papers and books on the topic as you can. Knowledge is power when dealing with Doctors\Cardiologists.

They expect you to know nothing so when you come armed with data you may find you get a better reception.

Thats all for now, any questions please ask. Someone is always here to help.

You may also like...

Hi everyone☀️ Just wanted to ask the question regarding travel insurance when diagnosed with AF?

Just diagnosed with AF after 30 years of problems

this right... I have just recently had a five day ecg which showed up AF. My cardiologist asked...

19 year old - Diagnosed with AF - confused from Doctors response.

episodes I don't have a high pulse rate or anything. I have had an echocardiogram and the results...

Just been diagnosed with AF

middle of the night, I have been on sotalol 80mg per day and aspirin. I feel like I have lost a...

Just diagnosed with AF today

for an ECG. It appears I have AF but have no symptoms at all. The gp said I have an irregular...