My af story so far (scared the life out of me)

[Runcrans]

Hi there, back in September this year I got out of bed Sunday morning for my usual 7mile run ,I've done this for the last 12 years , I felt a bit tired so checked my pulse which I never ever do , it was fast and erratic ,I shrugged this off and off I went , two miles in I had to stop just couldn't run any further ,I let things settle and off I went again 1 mile on stopping again , I new something was wrong so headed back to the car , fast forward to walk in center , ECG ,wheelchair to a&e ,told I've got af , resus room bag of flecainide ? Heart monitors ,X-ray ,20 mins after pulse ok ,sent home discharged .back at a&e 11.30 pm last Saturday same thing but the flecainide did nothing ,gave me a bisoprolol and put me on a ward , 9.00am pulse went back to normal , I was released with the two meds to take if and when I needed them , I've had another 3 af episodes over this week two reverting back on there selfs , this has shook my world I'm panicking beyond belief , after my last episode after the meds I've been feeling very thirsty ,a bit spaced out , thick head ,and fatigued beyond belief , is this the af or the meds , (50mg flecainide and 1.25mg bisoprolol one of each when in af only ) I'm a 46 year old male ,keep fit ,eat quite decent ,don't smoke , don't drink , thanks for reading this any advice would be much appreciated

[jedimasterlincoln]

I'd say from personal experience that it's both. You may find some of the fatigue and thick head/spaced out feeling settles once you become "fully loaded" meds wise in a couple of weeks. Although if you've only been told to take them intermittently you might take longer to adjust to them.

I've had Paroxysmal AF since August 2013, Flecanide IV has never worked for me, DC cardioversion (electric shock) is the only thing that reverts me back to normal, and I've just had extra electrical pathways in my heart killed off for the 2nd time.

I totally understand where you are coming from, AF attacks are scary, feel like your heart wants to jump out of tour throat and in my case make me want to collapse in a heap.

[Runcrans in reply to jedimasterlincoln]

Hi , yes I had an attack in the early hours 2.am this morning , I ran downstairs took the tablets came back up sat on the bed and I'd gone back to normal , but all day at work today's been a struggle I've got a manual job , felt like really poorly kept going hot too , thanks for your reply cheers Paul

[BobD Volunteer]

Hello and welcome to AF> I doubt there is one of use here who has not been where you are now and it will get better.Not the AF, just the way you deal with it. My first bit of advice is to read all you can about AF from the main Atrial Fibrillation Association website including checking to see what your risk factors are. AF increases you stroke risks by a factor of five so it is important that you look closely at CHADS2VASC and work out if you should be on anticoagulants or not.

Your life style may not be relevant although there is some evidence that over training can be responsible in some people. The bisoprolol is a beta blocker which slows your heart and makes most people feel like they are running through mud. The flecainide attempts to put your heart back into NSR (normal synus rhythm but doesn't work for everybody. AF is a long journey so buckle up and prepare for the ride. Sometime you should maybe see and EP (electrophysiologist) as these are the experts. GPs are seldom qualified to give you the best treatment and this often applies to ordinary cardiologists (the plumbers).

Stay well hydrated. stay off any stimulants and ask any specific questions and somebody here will have an answer.

Bob

[Runcrans in reply to BobD]

Thanks bob

[Vony]

I totally empathise with you..i am 36 and was very fit and healthy, with 2 young children and ended up in resus with fast AF in aug 2013 after feeling a bit out of sorts during work. I was later diagnosed with multiple arrythmias. Keep going to A and E is my advice with every episode that doesn't settle, as if you need a referral to an electrophysiologist (EP) or an ablation, you need to get your symptoms recorded as much as poss and as soon as poss and get the ball rolling. This may NOT happen to you though so don't worry about what might be. I began to develop symptoms daily and quite severe but had an ablation recently which has helped a little bit. Try not to let this rule your life ...AF will not kill you or shorten your life and with the guidance of a good EP specialist you can maybe get back to your exercise regime if you haven't already. I know it is easier said than done not to panic but i have just had to accept that i have this and enjoy life and health in spite of it. You may make a good recovery or just have occasional spells but all you can do is take it as it comes and be kind to yourself. I read a good quote when i developed arrythmias...it said 'I used to cry about having no shoes..and then I met a man who had no feet'. AF need not dictate your life. It can be life enhancing in some ways as i enjoy every second with my family now as i try not to take things for granted (i don't always succeed mind you!). Good luck...you will be FINE. Keep perspective. Ps. The meds as well as AF can cause lethargy and other things. Stay positive.

[Runcrans in reply to Vony]

Thanks very much vony , I suppose over time I will come to accept this just so scary rite now for me and my wife , I already appreciate everyone around me they've been fab especially my wife ,thanks again Paul

[Vony in reply to Runcrans]

AF is awful scary in itself..i used to get this feeling of impending doom very randomly and could not figure out why as i was not depressed or sad. The doc told me it was probably episodes of AF before i was diagnosed making me feel that way! So AF in itself causes anxiety because of the physiological occurences in your body.

[Emgee in reply to Vony]

I too used to experience 'feelings of doom' randomly and was diagnosed with mitral valve prolapse - whch turned out I didn't have.

Instead I had SVT and my first episode happened at work when my heart jumped into over 200 bpm. I went to Emergency and the cardiologist who saw me told me it would probably never happen again as he'd seen it happen once to a patient then never again.

I sometimes felt the kicking in to tachycardia like my heart thumped or twisted once and then I was off and running. I had been asked if I felt faint or dizzy, but I replied, No "I sometimes feel like I should be running to keep up with my heartbeat. I had episodes of tachycardia which they said was PAT and then SVT until this past year when I went to Emergency dept as I could not get my rapid heartbeat to convert with my usual methods. While there, a nurse remaked "You're all over the place" and that's when I was first told I had Atrial Fibrillation and my cardio doctor put me on Apixiban to prevent stroke.

Of course I had to stoke the Apixiban for 2 days prior to my ablation, but things went wrong and somehow my heart was pierced and I suffered Tamponade. Thankfully, my heart stopped bleeding and I am being monitored by my cardiologist with periodic Echocardiograms. to make sure there is no buildup of blood or fluid in my heart sac.

I was given a beta blocker Atenolol to slow my heart rate down if I go into A-Fib.

I was told by the director of electrophysiology that the ablation he did was 'successful' and he found the location and burnt it off - he said when my inflammation, etc. settles down, I may not have A Fib or SVT anymore. I certainly hope so. I've been livig so long with this PAT or SVT so do not like it one bit to now have AF to deal with. I always felt indigestion set my SVT off and when I was rid of the indigestion, it always settled down to normal again.

[jeanjeannie50 in reply to Vony]

Love your quote Vony.

[Vony in reply to jeanjeannie50]

I have had to remind myself of it quite a bit lately!

[Craggy]

I agree with the other responses and we all remember those scary early episodes. I think the best advice I can offer is for you to find out as much as you can about A/F and the treatment options. Do as much research as possible.

Once you get a fuller understanding, hopefully the fear factor will reduce or disappear and this may help to eliminate some of the stress that could be a contributory trigger.

Personally I have found that a positive attitude and determination has helped me to cope.

[Runcrans in reply to Craggy]

Thanks craggy , I'm just a born whittler lol , but really appreciate all these positive replies thanks again

[Vony in reply to Craggy]

So true Craggy about those early experiences and the fear...it is actually only reading someone else that reminds me how awful and frightened i used to be with every episode in the early days until iy became familiar and known what is happening. Great post Craggy about positive attitude

[souljacs4]

Hi you have already done the best thing you can to help yourself by joining this site. I can honestly say it has kept me sane the people here are so help full and will answer you questions Please see and EP as soon as you can there are many treatments for AF. work with your EP to find the best ones for you.

[Kimmieblue]

You're definitely in the right place here, this site is amazing for advice and support, keep reading up though, as there is lots of information on the AF website and here too.

All the best X

[CDreamer]

Welcome, agree with all the others have posted and would just add that if you haven't had contact with the NHS before now, and why would you when you were young and fit, I would advise you to become an expert on AF.

Bob is right, very few GPs know enough about AF to be able to give you good advice and a lot of the time, neither do A&E. I only went x2 because I found all they ever did was record my heart rate but you ALWAYS have to ask for a hard copy.

Don't assume this will go to your GP or your cardiologist or your EP. Keep your own records and ensure you have copies of every letter from any hospital to yr GP. Ask for a treatment plan.

As far as going to A&E for ECG recording, I gave up as often by the time I was seen and hooked up the episode had stopped. There is an app called AliveCor which you can purchase- consists of a case which fits over your smart phone and an app you download from App Store. Yu hold it in yr hands or over part of your body and it takes an ECG, you now have a record to show cardiologists and EP. Then you get to have a treatment plan, without the evidence, you don't as until the docs see the evidence they are reluctant to treat until they are certain. I spent far too long, 8 years, suffering because I didn't know this, when I found out through this forum, the AFA and their patients' day where I met the best experts in this field, I became more proactive.

In the past 12 months I had 2 Ablations and since March, no more AF, no more meds, it isn't a cure, but for now at least I am free of episodes, as are many on this site,

Best wishes and sorry it's so long!

[Runcrans in reply to CDreamer]

Thank you for your reply , I have been upto the a&e three times now and had ECG proof I was in af , the forth time I went up I reverted in the waiting room lol, but still had to endure blood tests ,ECG , and see a doctor I went up at 11.30 and didn't get out till 2.30 am , a doctor told me to blow on my thumb ? Or splash ice cold water on my face next time it happened , thanks again paul

[Oldcarol in reply to Runcrans]

It is amazing how non-chalant ER staff can be when they see a AF patient. Most of my experience is yes, it is gone by the time they see you. They are used to it and we arent. However, after going to ER 3 times in one week when this started, I have learned to wait it out and thankfully mine has never lasted longer than 3-4 hours. However, I have an occasional rise in blood pressure that scares me and I went to ER (176/115) and again it was back down by the time I saw the triage nurse. U never know what to do really in the first stages. It is scary, but my ER doc told me to do the same thing about the cold water in the face. He said put ice in the sink and dunk your head.

Hoping u well. This forum is truly the best reassurance and advice u can get.

[carriewoods]

I second all the replies here. I was terrified when I had my first A&E visits due to PAF. I'm still very wary of it but try to live a normal life. I'm still frightened of it but knowing more about it has helped me cope. I wish you well and keep visiting this site it helps me cope.

[jondeanp]

I was diagnosed at the age of 45 last year. I had experienced what were previously diagnosed as occasional ectopic beats for a number of years

A week afte,r what was a particularly gruelling 8 mile run, my HR went mad but it didn't really bother me. I just felt like i needed to rest

After a nights sleep my wife ordered me to the doctors who also didn't show any concern

After 3 days and an ECG at the doctors i was sent to hospital where i was diagnosed, but as it had been present for more than 24 hours (i may be wrong on the duration), i had to go through the process of getting prep'd for a cardioversion. That took 5 months, with the same persistent AF (although managed with bisoprolol) throughout

After a succesfull cardioversion and a few months to settle down i have just slowly started running again

One lesson for me is next time if/ when it happens i will be straight down to A&E

I presume what your feeling maybe a combination of the AF & the meds designed to managed it

Hope you get things under control

[Runcrans]

Thanks for the reply , at least your back running which is very good news , I thought I was going to have to hang up my asics for good which really upset me has I love my Sunday morning run round the sherwood pines in mansfield notts , I've run this all year round and love to see all four seasons come and go , all the wildlife running about ,I always get up early Christmas Eve and go down there and if I'm lucky which I have been a few years I see deers darting about which really makes my Christmas special , but maybe just have to take the dogs for a walk this year , thanks again Paul

[Runcrans]

I've managed to get a consultation with a cardiologist tomorrow it was a cancelation , what sort of questions should I be asking him cheers Paul

[RiderontheStorm]

I feel your pain, Read my initial post about being "out of control".. . I went from feeling and acting like I am 40 and very physically fit (even tho I am single in my 50's) to feeling like I was 80 years old and constantly out of breath.. After a CV and meds I sprinted up the 5 floors to my Dr for an EKG afterwards.. Humbled and happy with a steady HB now... Adapt, improvise and Overcome.