I was rushed to hospital just over a week ago with a suspected heart attack. After various blood tests and ecg's and a full search of my medical history they decided that I was suffering AF. As I had been having tests for over two years without any such definitive statement my first thought was relief " at least they now know what they are treating"
I'm now completely unsure a to my future. I am constantly tired and light headed whereas before it was only very occasionally. I feel extremely depressed and I just do not know whether this is temporary or this the rest of my life (I am 66).
Am I just awaiting the next severe attack and visit to A & E or is there hope.
Written by
ash16
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That more or less describes my introduction to AF as well. The good news for you is that it was not a heart attack and the equally good news is that AF can be managed in various ways and, hopeless as it looks to us at diagnosis, life can be very good again - if different.
Two things you will need are knowledge and a good Electrophysiologist (a cardiologist specialising in heart rhythms) sooner rather than later. There is a wealth of information on the main AFA website and on this forum. I know exactly what you mean about waiting for the next episode - often that was worse than the AF itself. My PAF is currently completely controlled by drugs and life is almost the same as before diagnosis but like you, I was fearful of what had happened and of how I could cope. Once a management plan is in place - and it works - the relief is marvellous and AF gets put into the background, allowing us to get on with our lives.
You don't say if you are seeing a consultant, but, if not, that would be my priority. Keep posting as there are so many helpful, knowledgeable people just like you on this forum - and we've all been where you are today.
Thank you for taking the time to respond in such detail Finvola.
I am still with the Cardiologist and he wants to see in 6 weeks but until I went on the web sites to try to understand the condition more no one had mentioned an Electrophysiologist ( perhaps my cardiologist is one I will ask him next time I see him).
The problem at the moment is that in the past when I had attacks (even though I didn't know what they were at the time) the symptoms passed within an hour or so and I could go for months without them re-occurring whereas now, although the chest pains have gone, all the others persist.
I will keep posting and once again thank you for your consideration
The main AFA website has a list of EPs on it and other cardiac support specialists. You can filter to see more info. There are a some EPs who are not on the list but by a little research of them starting with the NHS hospital(s) they practice that and then the private hospital(s) you should be able to find out as well as picking up their CV as well.
Some cardiologists have a special interest in arrhythmias which you can find out by looking at their profile on the hospital website. My cardiologist liased with an EP and when he judged I needed an ablation he consulted him and I was booked for the procedure without ever seeing the EP!
However I agree with others that it would be better from the point of view of getting suitable drug treatment and a forward plan to see an EP soon if you can.
My AF 'journey' started 15 years ago and I have to say 'if I wanted to get where I am now I wouldn't start from there'. Of course you are feeling bad in all sorts of ways now but AF treatment, advice and support available today should give you hope!
AF is life changing not life threatening. There are treatments and you do need to see a specialist not just an A and E doctor or your GP. Neither have the knowledge and nor do many cardiologists as the specialists are electrophysiologists-- cardiologists with a special interest in the electrical system of the heart. They are the electricians to the ordinary cardiologists plumber.
AF Association website have a wealth of booklets on all aspects of the condition and I urge you to read as many as you can as knowledge is power. Many people cope with AF and once you have learned your limitations then so will you and doubtless not need to rush to A and E but first you need to see that specialists. Ask your GP for a referral soon.
Also at your age you may well need to be on anticoagulant as AF makes us five times more at risk of stroke and you already have one point on the board for your age so again check CHADSVASC on AF Association site and speak about it to your doctor.
You do not mention what drugs they have put you on but many , especially beta blockers will make you feel almost worse than the condition.
The good news is that once you learn all you can you will no doubt be able to make some life style changes and live a more healthy life which should ensure that you make the most of your life.
Ask any specific question and we will try to answer.
Your future holds lots of promise. AF is just an electrical malfunction and having a heart condition sounds scary to start with. As you gain knowledge and experience, it becomes less so. Lots of us are far better now than when we were first diagnosed.
I am in East Anglia and chose to go to Papworth to see a specialist in AF, as other have said it is vital you get referred to an AF specialist not a general cardiology unit consultant.
Research and learn as much as you can and then develop a lifestyle plan to fight the AF.
Try to relax as stress and tension will feed off itself. Remember that AF is not life threatening.
I am 65yrs old and have been AF free (and free of any symptons) for 10 months and I intend to remain that way!
I have gone through the depression stage. I now try to take control of the things I can influence and recommend you do the same. Please think positive.
I have afib and am in the US as you may be where we usually see cardiologists but the Brit's are correct in the it is good to see a electrophysiologist but you have to request or get a referral to one at least in the system i am in. I resisted drugs for a while but am now on Diltiazen and pradaxa for blood thinning and it is ok. I can still swim 50 laps....while you are waiting for your appointment try some yoga...there are a lot of recent studys out now showing 1 hours of yoga twice a week is having significant results with afib so i am going to take it back up again myself. Good luck
Hi ash16, don't be fobbed off by your GP or your local cardiology unit. You have to see an EP. Also, if you are like I was, the anxiety and heightened awareness allowed me to almost feel dizzy most of the time. You need to find a distractor and not allow the condition to rule your life. I used to be too scared to go outside my comfort zone so was never further than a mile from my car. Totally crap for a hill walker!
HI Ash
I'm nearly 66, diagnosed at 53, felt exactly like you and knew nothing. It feels like a nightmare but it needn't be.
Learn as much as you can on here/where ever, and as Mike just said "don't be fobbed off by your GP or your local cardiology unit. You have to see an EP.", that is the key, seeing the EP.
Get a referral to an EP, pay privately if you need to (£250'ish for consult), and that's where everything starts. They will hopefully get you on the right drugs and maybe other treatment eventually. Don't put up with advice from anyone else.
When you ask for a referral, you might want to call the EP a Heart Rhythm Specialist. That seemed to work with my GP and I got a referral to one of my choice direct (and private).
PS. I have really bad AF/arrhythmia, 24/7. I'm on drugs and I feel fine and can do anything I would do normally which includes farming, although now scaling things down and playing more golf than farming
You've taken a huge jump by finding this forum and getting involved, great start.
I had an ablation 11 years ago and it worked for 8 years completely. But something has started so back on drugs. I've been tried on various and Propafenone worked well but ended up on Disopyramide. But we're all different and what works for one may not for another, i.e. I can't take Fecainide which is probably the most common one of all.
You have my total sympathy and are in the same boat as many of us since learning we had AF (and I'm about your age). What meds have they put you on? If none then you need to see your GP asap, and if they have prescribed something these should be lessening the recurrence of another bout.
I was diagnosed 18 months ago and for a while was OK but at the beginning of December started feeling dizzy again and am still trying to get to the bottom of what has changed.
I think all of us here will agree that it is a complex condition to get the balance of meds right for each individual and in some cases a matter of trial and error.
They may offer you an ablation as I was but unfortunately the EP study didn't pinpoint the problem so I am stuck on meds which do have rotten side effects.
Do let us know how you get on but try and stay positive : at least now you know what you've got and the journey to controlling it starts now.
All the best
PS: I would highly recommend you to ring the AF Association and find out if there are any local support groups you could attend. The psychological effects of this condition are almost as bad as they physical ones.
Good for you to take your symptoms seriously. Many things can mimic a heart attack, and every one of them needs to be taken seriously. I'm also 66, and I've been to the ER (A&E) a few times with possible cardiac symptoms. Once it was an AF attack, another time it was severe heartburn. Both times the docs and nurses praised me for taking it seriously and said no matter what, if it feels like it could be cardiac, come in and get it checked out.
As for the rest of your life, all you have is this moment. Here's Dr Koda's Rx for a happy life:
1. Use this moment well.
2. If you get another moment, use that one well.
3. Repeat.
You are not alone. I have a flecainide-induced autoiummune disorder and have been through depths of depression worse than I thought possible. You'll be fine. No, I mean you *are* fine, you just don't know it.
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