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How long did it take for you to receive correct diagnosis of AF?

AFAssociation1 profile image
26 Replies

There is greater need for awareness and understanding of heart rhythm disorders, or cardiac arrhythmias, Atrial fibrillation (AF) is the most common arrhythmia in the world. However, the journey from onset of symptoms to diagnosis can be challenging.

How long did it take for you to be diagnosed?

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26 Replies
fibber profile image
fibber

Took almost 2 yrs..developed after ablation for svt.

AuntieCrazy profile image
AuntieCrazy

Reckon I had it a long while - seems to be in the same place as previous injuries and made worse when I started blood pressure tablets - I just thought, for a long time, it was my spinal injuries throbbing. Seriously ill when I went to the gp July 2011, who realised I had AF but not the fact I must be in heart failure - that was not diagnosed until echocardiogram in cardiology January 2012 after becoming more and more ill

Robert53 profile image
Robert53

I developed it 4days after heart surgery had 2cardiac aversions and an ablation it failed to revert so waiting for another ablation.

TheStand profile image
TheStand

I was hospitalized in 2001 and diagnosed at that time with A-Fib. The Cardio Dr put me on Toporal and for the next 11 years did noting else even thought I told him at every appt that i was still having attacks. I fired him and went to see and EP in may of 2012. I am now on Rythmol and wafarin and waiting until Jan/Fed 2013 for an ablation.

Marc_kinder profile image
Marc_kinder

I had a few episodes each year since i was 24. Didn't think to much about it until age 31. My episodes started coming during and after working out. I got concerned, so I went to see Cardiologist. He told me to wear event monitor, but not do anything while I was wearing it. I recorded when anytime I felt a possible episode but the doc said there was nothing wrong with me. Two years later after have 3 episodes in a row that got progressively worse. I went to another Cardiologist and they started testing and wearing Holter monitors. That started in April 2011. In July an EP diagnosed me with chronic recurrent paroxsymal afib and chronic tachycardia. In August 2011 I had my first catheter ablation. Currently I am on 150 mg Toprol XL, 150 mg Tambocor, and low dose aspirin. My EP wants to do another ablation at some point. Happy Heart Beats!!

elmbury profile image
elmbury

From about 12 years ago I noticed having 'increased heart-rate' incidents when monitoring myself during and after cycling - but they were very rare, about one every 3 or 4 months. As there were no other effects I did not worry about it but eventually mentioned it to a doctor. As it was infrequent she said to come in when it was happening so they could do an ECG, as a the ECG they took then was normal. It took until last year before an incident and closeness to the doctor's surgery coincided. Immediately the likely cause was diagnosed and an appointment made with a specialist. He wanted to do more tests but put me on aspirin temporarily while I was away from the UK for several months. During this time my AF incidents were becoming more common and it seems I went into permanent AF towards the end of my trip away. On return the specialist did further tests/heart scans and because of other factors (i.e. age, decent level of fitness, normal blood pressure etc.) he has decided my risks are very low so am no longer on anything with no further treatment planned, but it should be monitored every year and appropriate blood thinners considered later. It hardly affects my daily life so am happy with this.

SRMGrandma profile image
SRMGrandmaVolunteer

My first episode in July 2002 was scary enough to send me straight to the ER and I was admitted to the hospital and converted to normal rhythm on my own in about 7 hours. They sent me on my way just saying to continue my BP meds and let them know if it happened again. I decided to seek out a physician who runs the Women's Heart Center at a major medical center in our city and after having the 30 day event monitor and stress tests the definitive diagnosis of A.F. was discussed. After years with one episode/year I know have several per year, still always resolving spontaneously in 12-20 hours and I take Pradaxa to decrease risk of stroke. Acupuncture helps keep my blood pressure lower and the episodes further apart. While I think of it every day, it does not affect my life much and I hope it stays that way.

RainingCatz profile image
RainingCatz

I never monitored my heart. It never crossed my mind. I was in my mid 20s when I had a sharp chest pain after feeling stressed out whilst Christmas shopping. I saw my GP who referred me to cardio. I have no memory of the outcome. I vaguely remember having an ecg. (I suffer from poor memory and depression) In 2009, I was very unwell at work. I was struggling walking, like I was carrying a heavy load and I was struggling breathing and blacking out. That year I was diagnosed with AF. I have anxiety issues which causes the AF sometimes. After looking at my notes, cardio said that I was irregular in my 20s but nothing was done. I just have no memory of feedback or to take meds.

I now take Flecainide, Verapamil and Warfarin. If I feel like I am in af and I can cope, I take an extra Flec.

mumknowsbest profile image
mumknowsbestVolunteer

I was one of the lucky ones and was diagnosed immediately. It did take some time for the medics to refer me to a cardiologist but once that happened I was fine.

bulworth profile image
bulworth

my primary discovered it during a quarterly appointment doing a routine stethoscope check. I was asymptomatic so I could have had it for a while because I had not had an EKG for a year & a half before that.

Juls54 profile image
Juls54

Documented AF & A.Flutter

In 2008 I started to actively seek a diagnosis which took 2 years , the Flutter was diagnosed first via a stress test - this is something I have had all my life , I just thought that was normal. The AF started out of the blue in 2007 I was actually lying down reading a book when it hit and continued for 11 hours that time . I first had this when I was 18 yrs.old on & off over 4 year period , my mother had the same thing & they had told her it was nothing - just something women get a hormonal thing & don't worry about it !!( my mother died in 1994 she had multiple occlusions on her brain scan & AF was documented on her death certificate). In 2009 I was given a Holter monitor for 24 hours which of course showed nothing , my cardiologist out of frustration I guess , told me to go to any GP Clinic when it occurred & ask them to do a ECG & fax the tracing to his office which was done ( causing much panic at that GP clinic) My cardiologist had in the meantime referred me to one of his partners who specialised in rhythm disorders what a disaster that was this Doctor told me one of his friends had written this amazing book called Hyperventilation Syndrome which he though in my case was causing my AF he made this assumption within 15 minutes of meeting me - as I did not suffer from panic or anxiety attacks I left his office never to return. The AF continued & the attacks became more frequent & lasted longer up to 24 hours . In 2010 I asked my GP for a referral to another Cardiologist who specialised in rhythm disorders & treatment commenced Tambocor 100 mg morning & night & 50- 100mg for break thru runs which I get , 100 mg asprin pm .

The moral of this story you must be responsible for your own health .

Bramblepatchwork profile image
Bramblepatchwork

I was mis-diagnosed by my GP and occupational health doctors at my work.They said I had ME and panic attacks.At no time was my heart checked even with a stethoscope,it was only when I could'nt breathe when climbing a hill and nearly passed out ,I saw another GP and he diagnosed me within 2 minutes.Because of the delay of 2 years with this condition my heart muscle was thickened,it was too late for a de-fibrillation attempt.By the way I also had undiagnosed asthma.

Bramblepatchwork profile image
Bramblepatchwork

I was mis-diagnosed by my GP and occupational health doctors at my work.They said I had ME and panic attacks.At no time was my heart checked even with a stethoscope,it was only when I could'nt breathe when climbing a hill and nearly passed out ,I saw another GP and he diagnosed me within 2 minutes.Because of the delay of 2 years with this condition my heart muscle was thickened,it was too late for a de-fibrillation attempt.By the way I also had undiagnosed asthma.

mkp589cmn profile image
mkp589cmn

In the short version right at 10 years. Very frustrating.

andypoole profile image
andypoole

This is how long it took for me:

dailymail.co.uk/health/arti...

Jason1971 profile image
Jason1971

I was suffering dizzy spells whilst exercising and went to my Doctor's who on checking my pulse gave me an ECG. I was diagnosed there and saw a consultant about two weeks later. I have no idea what caused me to have AF, as I have been fortunate so far in life not to have anything wrong with me (Broken bones, muscle tears aside). I think this is going to be one big learning curve.

slipmaster profile image
slipmaster

Whilst i have had heart probs for years i may have ignored it passing it as slight angina or blood pressure but went to gp for something else and he advised me to go hospital with a letter saying he suspected AF They keept me in overnight confirmed AF and commenced warfarin

migmog profile image
migmog

Was diagnosed immediately following phoning GP and saying that I did not feel too good. Could not pin it on a virus or infection. Did mention I wonder if it was the heart. So off I went down to practice. The nurse on duty wired me up to an ECG. Thankfully at that time the GP was working on a medical trial based 25miles away. The reading was picked up by this trial - lo and behold the diagnosis been confirmed within 30mins of my appoinment.

jbrucej profile image
jbrucej

First time I passed out and had uncontrolled shaking. The aid car took me to the ED and the EKG showed AFib which they cardioverted after a couple of hours. So it didn't take me long to get diagnosed.

Beancounter profile image
BeancounterVolunteer

How long to get diagnosed?, really hard to answer if I am honest. I was diagnosed on Nov 30th last year in an A & E unit.

But how long before had I had it?, well if the ED is a symptom, and for me apart from the one incident probably my only symptom, then possible as long as 10 - 12 years.

And in that time I have had doctors take my pulse and mutter that it's "difficult to measure" and even had a chinese doctor tell me my heart "was not right" (5 years ago) without actually anyone telling me what A Fib was.

But I need to take a lot of the blame, I knew something was wrong, just didn't really want to find out what.

sheffieldlass profile image
sheffieldlass

i am just 41 and was diagnosed with AF two days after my 41st birthday. i had been suffering with palpations since i was 19. the GP said it was panic attacks a year later i went back as i was getting pains in my neck during the attack especially when walking up hills. They said the same, i developed high blood pressure and was very over weight so they now sent me for a ECG which i was on about 30 seconds and it was normal. the years went on and so did the attacks lasting from seconds to a couple of hours. but i did not go back to GP as they made me feel foolish. then 5 years ago still suffering with high BP and i had now developed diabetes i decided enough was enough and i had to lose weight for myself and children. Which i did, over 8 stone lighter and i was feeling great but still having palpations and severe high blood pressure even though i was taking a cocktail of drugs. which is damaging my eyes not the diabetes because that is that well controlled. anyway 3 weeks ago my heart was racing and i felt like i had a bird in my chest flapping, i tried to ignore it and a few hours later it passed. the next day the same again i was scared .then in the night i woke with my heart pounding in my chest and coughing with the palpations at 5am i got up and tried to take my mind off them by having a shower but they had still not gone by 9am and i was feeling a bit weak and scared so i decided to go to AE. i thought they would say it was a panic attack and send me home lol. but they said my heart was over 190 and my rhythm was all over the place. it took 16 hrs to return to normal with drugs. they came at night and said they were going to have to shock my heart if the treatment did not work after they had ruled out a blood clot in my heart . OMG i thought i was going to die. what about the kids, lee my partner of over 20 years and my little baby boy who was only 7 months. but thankfully it got better and there was no blood clot.they sent me home on new meds warfarin and bisoprol and said i had AF. if it started again to go straight back to AE and they were definitely not panic attacks.they sent home with no information about it just told me to wait for appointment to see consultant 3 months away. but then i stumbled on this site thank god.

Maitha profile image
Maitha

As far as I can remember my first AF attack was 12 years ago while looking after my mom during major surgery

All scary attacks were diagnosed as panic attackers and I was on medication for few years till last year when at last the flutter got recorded during the attacks

I guess it is not doctors fault coz AF attacks were off /on for few seconds or minutes and whenever I reached ER my ECG shows normal

I'm happy to be diagnosed at last but really not happy to know that I may need ablation soon since medication is not working for me as far

Main issue ablation in my country is rather new and I can't trust them and I'm planning to get it done in UK by DR SChilling

Honeywine profile image
Honeywine

Hi. I had rheumatic fever as a child, In hospital for a very long time lying on my back, also breathing problems ,coughs colds flu etc, When I was about 18, I purchased a 2nd hand Bycyle and built my strength up and after a few years would think nothing of cycling 80-100 miles a day. In later years had a bad recurrance of asthma so the full regime of variose meds.But then due to Family stresses over a 3 year period , ending last October 2012, went to Docs as I had bronchiectasis and discovered I had AF. So probably had it for several years but was not diagnosed until then.

dedeottie profile image
dedeottie

Ten years and 3 T.I.A.s before the correct diagnosis. Ten years spent trying to catch the episodes on an e.c.g. 1 T.I.A. diagnosed as panic attack in A and E and another diagnosed as a migraine. Finally,irregular rhythm caught while investigating 3rd T.I.A. At my insistence. I am female and was 55 but I had to battle with my G.P. for prescription of warfarin even though it had been recommended by the hospital . I was exhausted by the end!! Anyway a change of area and new G.P. and E.P. have all improved things thank goodness.

I was diagnosed 10 years ago when it got so bad I collapsed in a shop.

In hindsight, and knowing what I know now, I had heart arrhythmia at least 8 years prior to that diagnosis. I was given beta-blockers at the time by my GP, I think they worked but was not referred to any specialist.

Arrhythmias are not understood by the public, and nor by the general medical professional. more awareness is needed instead of everyone waiting till it becomes really unavoidable.

Even though I now sort of know what I'm doing regarding AF, it still took me some 2 years to get passed my GP and get some action, and then I had to insist on being referred.

Regards

Koll

Approx. 2 years or so ago I went to my GP with palpitations, they did an ECG an found I had a slow heart rate but did nothing about it.

Last October I mentioned to the GP that I was extremely tired, getting dizzy and sleeping when I got home from work. ECG was done and slow heart rate was recorded, referred to Cardiologist. Had to wait until 11th November to see Cardiologist in the mean time I had a 24 hour period of palpitations and a fast heart rate on 13th October, saw doctor told me to drink cold water, said electrical problems could cause heart rate to go up and down. Cardiologist ordered blood tests echocardiogram and a 48hr holter monitor. Things got so bad GP signed me off work on 18th November. 3rd December echo done and monitor fitted. After nearly passing out when I got home from taking my monitor back briefly saw colleague of cardiologist who saw 'blips' on my 48hr monitor but not fully analysed at that point. 7 day monitor ordered. Clinic got me fitted with one a week later on as I was16th December as not prepared to wait the 5 weeks I was given by letter. Took back on 23rd December was called in to have another one fitted on 10th January as the last one was faulty so did not record anything. Day before got a letter from hospital to say nothing found on 48hr monitor and echo fine. Kept ringing for results but nothing. Nearly passed out on 30th January so rang GP got telephone appointment and he said results say everything normal but to go in on 31st January and he would go over results. So 31st January was day he told me diagnosis of PAF, ventricular and supraventricular ectopics and CHAD SCORE 2, cardiologist recommended beta blocker and aspirin even though monitor recorded heart rate as low as 40 bpm. Also stated on letter that as PAF aspirin fine and anti-coagulants not necessary yet. Secretary had sent letter on 30th December GP sat on letter for a month and if it was not for me not being well and phoning GP I would still be in the dark. Beta blockers stopped after 4 days as hyper sensitive and heart rate lowered even more. Not much better on calcium channel blockers. GP has refused to refer to EP or take me off aspirin. Currently waiting for PALS to contact me back regarding all of the above. GP change imminent after next appointment on 25th February 2014.

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