Is there any advice you have received... - Atrial Fibrillati...
Is there any advice you have received about your condition that would have been valuable to know at the time of receiving the diagnosis?
Please select one:
I was not informed that my AF would probably end up in persistent AF nor was I informed about ablation and if it would be suitable for me. I was never offered an ablation until I was in persistent AF.
Same with me.
@cbsrbpm That is terrible. A patient is always better off when afib is treated as soon as possible. Was the person who you saw for this a gp, or general cardiologist? I was told about ablation when it was still intermittant, but was bad enough to have serious symptoms. the doctors I saw previous to this did not really know what was going on. I finally ended up purchasing a subscription to uptodate.com which is medical info you can get at the doctor/nurse level or the patient level. I picked doctor level and used a dictionary when necessary. That is how I got info about all the avaiable precedures and drugs for afib. I came across this site when I was googling a question about afib and one of the answers was from uptodate.com; It started out as a great response to my question and partway through stated"subscribe to continue". However this site is free to doctors at their hospital because the hospital buys it for their personnel to use on any hospital conputer.
Also on this site, available to doctors, is the proper dose to start with for warfarin if a person has a genetic glitch whereby they detox certain drugs (warfarin) much more slowly through specific liver detox pathways--causing a toxic overload of the drug and requiring the doctor to give a lower dose. I knew about this from my genetic tests and showed the detox pathway genetic tests to my first cardiologist so she could determine the proper starting dose. She looked at the tests and said she was glad I did them, but did not bother to look up info on the proper dose. She should have started me on 1 mg and worked up to 2.5--2.6 mg. Instead she stared me on 5 mg. and this caused lots of bleeding after 3 days---which could have caused a stroke. So, I looked up the dose info and switched to a local dr. and the coumadin lab nurse--however i HAD TO INFORM THE COUMADIN LAB NURSE ABOUT THE PROPER STARTING DOSE AND OFFERED TO SHOW HER THE GENETIC TESTS AND THE RELEVANT INFO ON HER HOSPITALS WEB SITE FOR UPTODATE .COM THIS SITE HAD PAGES OF INFO ON THE PROPER DOSE FOR PEOPLE WITH MY 3 UNDERFUNCTIONG DETOX PATHWAYS, WHICH ARE THE ONES THROUGH WHICH WARFARIN LEAVES YOUR BODY. sO IT WAS PERFECTLY CLEAR AND ALSOI SAID i SHOULD BE STARTED ON 1 MG AND THAT MOST PEOPLE WITH THESE GENETIC POLYMNORPHISMS ARE IN RANGE TAKING 2.,5 AND SOME A TAD HIGHER.
Practise breathing slowly during an attack. Don't let anxiety make it worse.
At least I could have been questioned, evaluated or told of the great significance that sleep apnea plays in regard to afib!!!! 2 years later finally diagnosed by a fluke after my 4th a cardioversion and countless times of obviously not breathing 30 times per hour could have been avoided since this contributes to further stress on your heart and entire body organs! Medical field/WAKE UP and help us out here!!
Options for treatment were never explained by cardiologist.
I would like to have been told that I should be on anti-coagulants straight away instead of, aged 62, being told - they're not necessary at your age. I would also liked to have been told that ablation therapy was a viable option for cure instead of being advised by the elderly cardiologist "If I had AF I wouldn't let some clown tear up the insides of my heart". Bring on the clowns!
#AnticoagulateNow Your cardiologist is guilty of malpractice (except technically since he did not harm you he cannot be sued) You are lucky nothng happened. He was gambling with your life. Is he prejudiced against people over a certain age? What a &^*^&% He should have referred you to an electro physiologist for an evaluation.
Fructose malabsorption was a factor for me. It would have been helpful to know that dietary factors would be worth investigating.
@bonnie54 afib has multiple triggers and many of them are dietary---alcohol, sugar, caffeine, processed foods, salt, chocolate and others. WHY would a doctor not tell you at least that there are such a thing as triggers you can control by eliminating your exposure to them and that the above list includes some of the common ones.?? Actually, I recall that the 1st cardiologist who told me I had afib did not mention any triggers. She took an echocardiogram and told me my heart rate was 112 and not in NSR-60% of the time. Instead of telling me about triggers she said "stop taking your bp meds and any supplements (instead of eliminating the exicitatory ones) and take digoxin"! I replied that if I stopped taking my bp meds and started digoxin and took no supplements I would be dead within 3 day s. She said "well I have to lower your heart rate" I replied " If you kill me that would lower my heart rate" She was wrong-- no cardiologist tells a person with greatly managed bp to STOP taking there bp meds, especially when diovan and hctz is much healthier than digoxin. Digoxin is usually used on people with heart failure and in those who do not it can cause afib. She also tried to manage my warfarin in an ineffective manner and ignored the proper dosage due to detox genetic polymorphisms. I thought she was very unenlightened (stupid)
Benefits of compression stockings for DVT
Everything I know about AF I have gleaned from the internet. Doctors told me nothing.
I have been told nothing apart form take the tablets and crack on. Taken off thinners too.
This is the opposite of what some people have commented on. I was discharged from the hospital in afib. They coundn't do a cardioversion because I had been in afib for several days and not on anticoagulants (because I never had afib before). Later the next day I converted on my own. I wish I had been told there was a chance of that rather than assuming I would be in permanent afib. That and/or an ablation may be in my future, but I'll take one step at a time.
@KFog someone in afib SHOULD NOT be discharged from a hospital. they should be given a blood test for potassium and magnesium(which will show up low) and then an IV of magnesium sulfate and 2 bananas (for the potassium)(. then do another ekg-might be improved greatly. You should also have been referred to an electro physiologist for an evaluation I advise you to start collecting information.
Information about the role the vagus nerve plays in my AF and the importance of deep breathing to avoid a full blown episode.
Totally agree
@djmnet quinolone antibiotics can irritate the vagus nervbe and can cause heart disturbances by doing this.
Quinolone antibiotics are a nightmare. I had to have several iv courses of vancomycin because of multiple infections...many my symptoms of can be tracked back to those treatments 
I would have liked to know more about what may have caused it. I had one cardioversion which didn't take. I didn't realise I could have more later on. Didn't know about ablation. Was put on Warfarin because of likelihood of blood clots.
And I'm lucky in the postcode lottery because my local hospital happened to be one of the big London teaching hospitals which apparently has one of the best Cardiac departments in the country
I would liked to have been given practical advice about avoiding things such as alcohol or caffeine. I was asked how much I drank but no explanation as to why.
I would have liked advice on exercise. I was told last week I should avoid getting my HR up too much. Should have been told that at diagnosis
I feel I should have been told the consequences of being left in prolonged persistent AF.
I wasnt told anything just that I had AF these are the tablets you need And they gave me cardioversion as needed when got worst and finally had ablation but I don't see anybody regularly to see how its getting on
@CarolBic That is terrible. You should be seeing an electro physiologist for a checkup every 6 months. This would include an ekg, a physical exam, a blood test to measure electrolytes and added on to the metabolic panel a test for red blood cell magnesium because magnesium is not included in the metabolic panel. The ep should also calculate your QT interval, from looking at the ekg, because the afib and the drugs you have to take can make the qt interval too long which can be fatal. HE SHOULD ALSO HAVE TOLD YOU THAT YOU HAVE TO KEEP YOUR ELECTROLYTES HIGH ENOUGH BECAUSE THE DRUGS ELIMINATE THEM, BUT THEY SHOULD NOT BE TOO HIGH, AND THaT ANY SUPPLEMENTS WITH MAGNESIUM SHOULD NOT BE TAKEN WITHIN 3 HOURS OF THE MEDS. tHIS IS A WAY TO MANAGE THINGS SO YOU STAY OUR OF AFIB.
Same here Carol--It's been 3 years since I was first diagnosed with PAF. Saw a doctor at the hospital ( NOT a cardiologist) who gave me tablets then sent me away. Tablets I was given did nothing for me, so now I don't take anything apart from hawthorn and magnesium and an anti-coagulant. In my ignorance I thought I would at least get an annual appointment for a check-up or see an arrhythmia nurse. Some chance. If I felt I needed it, I would go privately to see an EP. Didn't even know those existed till I joined this forum.
To go for an ablation as soon as possible. My cardiologist put me off having one and I remained on meds with condition getting progressively worse for 10 years, had ablation in January 2016 and now AF free.
@wendy6 your doctor is terrible
No-one has ever advised me that PAF an evolve into AF, and initially I was misdiagnosed as having a urinary tract infection plus anxiety as a result!
Once diagnosed I was recommended to take a pill-in-the-pocket (PIP) approach, and passed up the chain to decide about my request for anti-coagulants! The specialist decided that I should take the PIP meds twice daily, plus another type of medication, but when I queried what the second meds actually did, instead of an explanation I was offered Ablation, and my rejection of this resulted in a letter to my GP concerning my Uncontrolled high BP (it's normal), high Cholesterol (Normal) and the cardiac defects shown via Ultrasound Scan (Obviously done while I wasn't paying attention!)
I wish I had been told where I could look up the details about specialists, and choose one who suited me! IMO I have learned everything of use regarding my PAF from other AF patients, even though once, while a hospital in-patient, a long term AF patient and I were split up for comparing notes and exchanging tips!
I wish there was a "buddy system" where a long term Fibrillator could be teamed up with a newcomer, to exchange advice, tips and reassurance!
@398emb was this doctor lying??? The very first cardiologist I saw in2011 due to fast heart rate sometimes. She gave me blood tests for lipids and other tings. The result of these tests was superlatively healthy. Such as total cholesterol 156, triglycerides 68, ldl 99 I also had had previously a ct scan of the heart which showed a calcium score of zero. When seeing the doctor my heart rate was normal. She said I should come back in 1 month and she would give me lipotor (to lower lipids)- I said "why? on the test you ordered yourseolf my lipids are fine and on the ct scan I have no coronary artery plaque" then she told me I had a long qt interval.
I said "do you mean i have long QT syndrome, a life threatening genetic illness for which I should have a genetic test? or do you mean the interval is lengthened due to an antibiotic I used or due to something I eat, or that my thyroid meds are too strong? which do you mean because they are vastly different things??"
She just made a face like she was having indigestion. Basically she did not know what she was talking about and told me my qt interval was long because the computer printed this on the ekg. However she did not know that women normally have longer qt intervals than men; that the computer algorithym for determining that it is too long is based on my chronological age and expects someone my age to have a shorter qt interval because I should have a less healthy heart , but this did not apply to me because I have a strong healthy heart and do lots of meditation and physical activity. If you plugged in a lower age the computer wlgoithym would say my qt interval was normal. ( I found this out later by consulting a heart rhythm specialist at another hospital)
I asked her what all the test results meant . She actually said "Well you have heart disease but it is not as bad as Dick Cheney" I said why exactly and what exactly is the heart disease I have? She said I really do not have heart disease now but I am going to have it in the future . so, she did not know what heart disease I had , but was sure I had one. She saw some indication that I would have a future heart disease but had no idea how to revers this directional trend. (lipitor would not do it ).
I said suppose I do not want to have heart disease in the future, and would be willing to do anything to avoid it "what would I have to do" She actually said "well, if youlived a nomadic life on the African plains and hunted for your dinner every day you would have no heart disease but this is sot of a myth" I told her I was cancelling my followup appointment with her and was moving the the Serengetti in Africa and would hunt for my dinner for 1 year and I would see her when I got back" What an idiot!!! The scary part is that she has people who are listening to her. Is she giving them heart disease?? how creepy
Not certain if the specialist was lying, or confused me with another patient, but my GP confirmed that I had none of the problems he was mentioning. He had actually only set eyes on me twice, each time for less than 3 minutes, and never actually had a conversation about my PAF, he discussed it with the junior doctor who saw me, then agreed our discussion. I think he was shocked that I questioned him about what the new meds were supposed to do. Thankfully my GP actually knows my medical history - I have a rare unrelated neurological disorder, as well as severe osteo Arthritis so they see me more often than would be normal - so he was able to ignore this erroneous feedback, but I don't want to see this specialist again in a hurry!
@389emb Your dr. may have been upcoding. this is a term used in the usa. It means writing various conditions you do not actually have but are worse than what you have because the insurance company will pay the hospital more money for these things.This is usually done within a hospital because the doctor's boss tells him to do it. A cardiologist I saw after my ablation , just for a brief check up with someone 2 miles from my house, in case of emergency, as my ep is 120 miles, told me I had heart failure. I told him I did not,
He insisted. I said-- in the echo cardiogram you yourself prescribed for me my ejection fraction was 67% ( % blood left ventricle sends out to body from that chamber);--heart failure has an ejection fraction of less than 40%. Very high ejection fraction 78% etc means uncontrolled or too high bp.On my home bp monitor and on your own bp check in the office, my pulse pressure is 40-45 which means my ejection fraction is good and my MAP( mean arterial pressure) is in the 90's so how can I have heart failure.
Pulse pressure is the difference between the upper and lower numbers of your bp. Mean arterial pressure is the average of the 2 numbers. It tells if your whole body is getting enough blood everywhere. If it is less than 65 you are not getting enough blood everywhere and are at great risk for a stroke or heat attack. If it is in the 80-90 range you are in great shape and have very good circulation.
I guess this doctor did not know that I was aware of these things. I told him that and also that I walk, ride a bike or walk on a treadmill for 4 miles twice a week; do weight training 1-2 times a week and take a 1 1/2 hr. Tai chi class 3 times a week. He said, shocked, "you do that?" then i told him I thought he was upcoding and that was Medicare Fraud. He said I was threatening him and was going to tell every doctor in every hospital on my medical record (which he had access to) tht I was threatening him. I told him if he slandered me to other doctors I would sue him, and that now I was threatening him. He sent me a formal letter saying he could no longer be my doctror ( which he was for 13 weeks) I think he is stupid and crazy.
I doubt the doctor was uploading: In the NHS I don't think that the money flows that way. Thankfully, at the moment, money is not the overriding factor in the UK (Although how long that will continue is another matter).
If I had been told about the AF Association and how informative the Forum is I would not have been so anxious for those first few months. Also I feel you should be told of ways to control AF episodes ie deep breathing etc.
It would have been helpful to have been told how Paroxysmal AF almost always progresses to that of persistent AF and the effects of each.
Yes, as well as a lot of other information I was glad to find out af would not kill me and to stay calm during an episode. It also made me realise the importance of anticoagulation.
I was told next to nothing when first diagnosed other than what the condition was called so I would have been grateful for a lot more information and advice, including avoiding alcohol (found that out by trial and error) and the importance of anti-coagulants.
Just about everything I've found out about AF since has been either on the AFA website or the Healthunlocked forum.
I would like to have been given some information on what caused my AF, I.E. Vagal Nerve
Just if he had told me it wasn't going to kill me I might have been much more relaxed!
That it wasn't a death sentence and although could not be cured was a manageable illness with good life expectancy.
How it would affect my daily life,instead of feeling i was about to die
I agree wholeheartedly with virtually ALL the comments listed. Original diagnosis renders you to a significantly "dark place" with little or no informed information from GP's allied to "few and far between contact" with Consultant. This comment is not intended to be a slight on our NHS I just wish lines of communication were better at Consultant status and that GP"s generally were MUCH more aware of symptoms of AF. So much time is lost being treated for a problem totally unrelated to your condition.
I voted No. I was given so much information by my Cardiologist, EP, and GP who have all been brilliant. Although I did go loaded with questions to each one.
Like others I was not told that the AF could become persistent--and at time almost constant, day and night. Also, I was not told that my sleep apnoea could conspire with my AF to put me in a higher stroke-risk category, or that having both would result in chronic fatigue. And critically I was not informed that untreated sleep apnoea (I was not given a C-PAP machine) could reverse a successful ablation. Thanks all of you myopic medics out there!
I was not informed about the value of the AFA blogs from fellow sufferers
I was not given any information by my GP. He gave no reassurance and did not refer me to a cardiologist.
Was told Bisoprolol would cure it (ho hum). Was not told I was stuck with it. Was told that as I am in persistent AF there's no point in an ablation or CV.
That's not true. I was in persistent AF. Had a cardioversion (in nsr for 20 mins) and was then put on Amiodarone which put me back into sinus and then made me bradycardic. An horrific Af episode in hospital, and a clear angiogram confirmed I had paroxsymal AF. I had an "acutely successful" ablation and am now AF free
Anticoagulant info
I wish GP had said initially what consultant said after 3 cardioversions plus one successful ablation: stay off the coffee!
I would like to have been given some proper information in the form of booklets etc. But most of all, the website address of the AF Association!
Like cbsrbpm, I was not informed that my AF would probably end up in persistent AF nor was I informed about ablation and if it would be suitable for me. I only found out about ablation at a AFA patients day and I then asked my cardio to refer me to an EP. My EP told me an ablation would not be successful in my case, since I had been persistent too long. So, as a result of the cardio doing not much, I've now got DCM and HF and now have a CRT-D pacemaker.
Need for medication to limit duration of episodes. This advice was not given by cardiologist or GP.
First episode 2001 in East Surrey Hospital patient for duration which lasted 8 or 9 days. Tested and investigated over next 12 months. Advised nothing found no info given and no condition specified. Next episode 2009 lasted a few hours and a&e doc suggested af might be the condition. Next 2015 lasting a few hours again. East Surrey A&e said see your gp. GP organised cardio appointment at ESH. Echo and ecg normal, 24 hr holter showed a few 'missed' beats. cardiologist assumes af. Beta blockers, anticoag and amlidopine. 6 months review. No info or advice. Only this forum has provided any practical advice and some very useful information.
After living with AF for over 12 yrs. I was never told, either here in the UK or in the USA where I was diagnosed,
How to try to relax and try to sit through it, using simple exercise in my breathing, to de stress me.
Instead I was put on a regime of Amioderone , which nearly killed me.
And still have the after effects, several years later.
I've had two Ablations and two cardio versions .
None worked..
I currently just use in long attacks a pill,in the pocket, plus I'm still,on warfarin.
I did not understand how unlikely it was for me to go back into rhythm. without the help of intervention -- cardio conversion.
That it would take time for my body to adjust to the medication - I felt rubbish for about 2 - 3 months. I began to think that life wasn't worth living if I was going to feel like that all the time.
More detailed information about pros & cons of various meds and about risk factors. My GP actually did a pretty good job, & referred me immediately to an EP.
That it (probably) wasn't going to kill although at times it may feel as if it was.
That once I realised the Dr's aim has always been to get me 'stable' and I've 2 ablations and several cardio versions and trial and error with meds- over a 9 year journey... I am 'stable' currently. It's just accepting that life's a bit different now. I've learned to recognise many of my triggers and listen to my body 😊
I wasn't really told very much at all. Take these tablets and see your GP if you experience another episode. My GP was not that helpful either. When I asked her if I should see an EP privately - she asked me what an EP was! Have taken myself twice to A&E who always mess around with my pills. I stick to what I feel is best for my body.
I was not told much at diagnosis, just this is a fib , here are your pills, see you in two weeks. I did alot of research then 4 mo later asked to see an EP. The EP, who was rmployed by a large University teaching hospnaffiliated with a med school was great. He taught me so much . Biggest message was about life style changes, emphasizing diet, wt loss, exercise. Sure wish first doc would have at least mentioned it. So Im off all meds( have PIP just in case a fib returns). Am doing all the changes plus mindfull meditation. No doc explained that I might have anxiety and depression. The changes are helping me phycically and mentally. Im actually thankful I got a fib as Im much healthier now than pre afib, crazy but true.
That this condition progresses.
On diagnosis my heart was irregular but heart rate just under 100. I was started on an anticoagulant and basically, dismissed as the heart rate was not considered to be high. It would have been valuable to have been told that if my heart rate became higher I should go back to my doctor. I was given the impression there was not really a problem so when my heart rate increased I just battled on. I went on to have 3 TIAs 3 years later and then was put on beablockers.
The clinical information I was given was good, but I wish that I had been told about this forum at the time. It has been an immense help.
I was diagnosed with AF. It turns out that I was valvular AF with a mitral valve needing repair. Everything I learned about AF was from my own research.
After I was diagnosed, at age 72, the cardiologist I eventually saw was very dismissive of most treatments, saying "you don't want ablation" (without proper explanation) and only reluctantly agreeing to a cardioversion.
Three years later, after finding AFA, I paid to see an EP privately.
I was then told that over age 75 - I could not have ablation on ? NHS!!
A lot more information should be made available on vagal AF...... how lifestyle and eating habits can effect the condition. How gastro problems such as stomach Ulcers, Helicobactor, Candida Albicans and many other digestive conditions can result in AF attacks.
A great deal more help could be directed to the psychological problems that go hand in hand with this condition such as Anxiety, depression etc
Amen
I was told that my paroxysmal AF will only get worse but, no explanation on what to expect just sent away with Flecainide as a pill in the pocket, and then told bye, bye, we will see you in six months, and that was it.
I was taken in as an emgency in 2014(long story of imcompitent GP's). Had lots of tests over the 12 days I was in hosiptal. Saw cardiologist twice, once very briefly and second visit he announced I had AF. Very briefly explained what it was (couldn't take it all I had never heard of it before). Told of drugs I would be on and that was that. They did not even tell me I was admitted with heart failure, I only found that out on my discharge letter which was 9 pages long. Also when I read that at home it had all the results for various ultra sound scans, ct scan where they inject fluid into the veins, echo ect, no one went through these with me, so I assume all is fairly good I donn't know.
I have a AF nurse and a Heart Failure nurse, lovely ladies but when I have asked about various side effects of some of the tabs, oh never seen or heard of that before. I was so glad I joined this AF group as many of the side effects have been had by many people on here. I asked my GP could I be referred to an EP, like someone else has said she said what's an EP. I asked the consultant same he just raised his eyebrows and said nothing.
Main complaint then is lack of information about the condition itself, lack of info on the drugs and their side effects. Lack of information on other procedures, an ablation has never once been mentioned to me. It just seems to be heres you pills of you go and get on with it. The AF forum is he best thing I have ever found, great people who help so many others. Sorry this is so long I have put me banner away now for the time being!
Cassie
That AF does not mean you are going to die! Do not panic if you are having an AF attack........
It makes me sad that almost every comment ( including my own)showed a gross lack of educating the patient, doesnt seem to matter what country you are from. I know I would have been much less anxious and depressed if someone would have warned me instead of me having to figure it out myself. And I am an RN( not cardiac). Very disappointing that the medical systems are so lacking in "the small things" but they will be happy to burn or freeze the heck out your heart.
everything i have found out is from research not from doctors explaining condition
Apart from the name of the illness and the reasons for taking anti-coagulation meds given at hospital bedside following first attack, all other info. has come from AFA and Health Unblocked forum. And we will be forever grateful for the advice, reassurance and empowering info. that has allowed us to become equal partners with the medics in establishing the best way forward.
I would have liked to have been told that what an EP was, and that I could be referred to one rather than a cardiologist. I would like to have been told there are option for treatment, not just medicate the symptoms. I would like to have had anticoagulants explained to me, and the need for them. I would like to have been given a leaflet with information about AF, and including web addresses of AF association and other forums. I have got most of my information from other Afibbers and forums. I turn up at hospital and doctors appointments with a notebook, and list of questions. Access immediatley to Arthymia Nurse Specialists, not just 10 days before scheduled Ablation.
When I was first diagnosed I was given next to no advice on the condition, but a lot of advice on warfarin. I wish I had been told the facts and likely prognosis of the condition, that there were options for my treatment, and that there was such a thing as ablation. I had to search and find these things out for myself. Most of all though, I wish I had been told that fear, worry and anxiety about it is common, but I can live a normal life !
I should have been told that losing weight could reduce my AF episodes
My 2014 cardiologist told me there was no connection between food and PAF attacks. I have since found here information about the vagus nerve and food triggers and have reduced both the frequency and the strength of the episodes considerably by keeping off all caffeine, eating less more slowly and doing abdominal exercises including deep breathing. Heart rate mobile phone apps and self testing for INR if on warfarin are also good to know about.
Multiple things!
(1) Tell us about AF Association!
I wish I had known about AF Association, because most of my good information came from reading these posts and asking questions. You folks also calmed my fears and "virtually held my hand" when things went screwy for me. For that I am so grateful.
(2) Tell us the truth!
I wish they had given me ALL the information up front. Tell me how it is going to feel. Tell me that it may persist. Tell me that the medications may not work. Tell me that I may be too tired to walk up the stairs. Tell me that the medications may make me sick to my stomach or that I might faint. Don't make me find out on my own, and then say, "Yes. That happens to people on these medications."
(3) Tell us all the options!
They originally offered medications and avoided talking to me about ablation because they said that I was too young. What??? When I persisted with a constant high HR that they could not control, they finally relented and let me see an electro-physiologist who recommended ablation BECAUSE I was young and a great candidate. Pfft!
Yes, 'Call us because we won't call you'. After my initial diagnosis and reversion to NSR without the planned cardioversion I was left to my own devices, which mainly consisted of reading BHF leaflets as this was in 2001. I had great difficulty persuading my GP that there was anything wrong with my heart when I had symptoms later and only when I had another spell in A&E did I have heart tests (without any explanation!) but once I was put on an effective treatment my PAF was ignored until another visit to A&E, extra medication added and ...........guess what? Even complaints to my GP about side effects got me nowhere until I was able to demonstrate a dramatic symptom thanks to Kardia. Advice on how to monitor my condition and when to contact somebody/anybody would have been very helpful.
Everything said above !
My GP did not offer any options that would address the AF. The local hospital later recommended cardioversion, which I had but with only very temporary success.
No information was given about the drugs I was prescribed, with the exception of warfarin. After a couple of months I refused to continue taking statins and bisoprolol because their side effects were so severe.
When my AF was diagnosed I was instructed to take warfarin. The warfarin nurse at GP practice made a passing reference to alternative anticoagulants but implied that they were unsafe. I am now taking rivaroxaban, thanks to the local cardiologist who has a different view on the merits of new drugs.
Ablation has never been mentioned as possible treatment for my AF.
Many causes of AF therefore I was not alone, many other sufferers. Warfarin is nothing to panic about and just get on with life.
I voted no ,I was lucky, my cardiologist immediately referred me to an EP when I brought in the ecg from my GP! ( my AF had been hard to catch) and my EP immediately put me on the waiting list for an ablation he said due to my age (46) that it was better to go straight down this road instead of trying anti arrithmics first . I felt bombarded with information !
I asked my first EP several years ago if losing weight might help. I had read some of the research done in Australia, and it made perfect sense. Obesity is increasing worldwide. AF is increasing worldwide It only seems logical that they are related in some way. I found mention in a 100 year old medical text about fatty hearts being prone to "palpitations". If you are obese, you probably have a fatty, misfiring heart. Here is a more recent mention in the research literature cardiovascres.oxfordjournal....
Well, suffice to say, he looked at me like I had two heads, and handed me a prescription for flecainide, and ushered me out the door, with zero discussion of lifestyle or weight loss.
To this day, no cardiologist or EP I have dealt with volunteers any information or guidance about weight loss being a major factor for lessening AF. It is a) pills b) cardioversion or c) ablation. In fact, if I bring up weight loss and/or lifestyle they look positively uncomfortable and unhappy. Such is life in the for-profit U.S. medical system.
I finally insisted on a second opinion after 4 months of awful side effects. I then saw a wonderful EP who was employed by a local university teaching hospital affiliated with a medical school. He changed the meds etc but most of visit was spent on him talking about life style changes ie wt loss(40-50 lb) get my BMI around 27 or less, healthy eating(5-7 veggies/day, healthy fats, fish etc and exercise. He said he cannot promise the a fib wont come back but it will be less aggressive. It has been 6 wks so far, Im a new person, no a fib yet, but even if it does come back, I will always be grateful to this EP for being open and honest. He didnt push ablation, which eould have been financially more lucrative to him, lol.
An explanation of what it actually meant and that it wouldn't result in a heart attack or sudden death! Also that it would take weeks before I actually had further tests and months before I get to see a cardiologist. It would have been nice to have been told not to panic! If it wasn't for the AF Association and the forum I wouldn't have a clue what was going on.
AFib is life changing, and usually not life threatening. Getting anxious and worrying, although a natural response, doesn't help you cope with your new health condition.
At the start of this life changing episode, a few encouraging words about pacing, planning and coping with my new permanent a fib situation would have helped.
Emergency admission with first episode of AF, converted to NSR after 9 hours. Seen by consultant the day after who said what it was, I asked would it happen again ,I was told it certainly would and was then discharged. I was given paperwork as I lived abroad at the time. I had no idea what AF was and as my episodes are not regular I remained in blissful ignorance for many years. I eventually found this site and couldn't believe that it could have some serious repercussions if not treated with some respect and treatment. Any information would have been helpful.
I didn't know and was shocked to find out my AF was persistent. I only found this out from the AF forum from some very informative people. I asked my doctor today and she has confirmed this which is now 3 weeks after my visit to the hospital.
I wish someone would have told me how the affect of alcohol would increase my heart rate and the fact that if you have AF then the best advice would be to have no alcohol or caffeine whatsoever.
I had to request a follow up with a cardiologist, after my first A/F attack when i ended up in a&e. My echo was normal my 24hour monitor was normal so i was given medication and just left. I didnt feel suported and kept going into A/F back and forward to the doctors phoning the ambulance. I had a stroke 12 months before and so i was anxious and needed reasurance that my treatment was what i needed. In the end i insisted on being refered to a cardiologist and he has looked after me so well and says i need long term follow ups. I am on bisoprolol smallest dose because i kept passing out with a slow heart rate yet still going into A/F rapid heart rate of 150. I take rivaroxaban to stop my blood clotting and he has recently added flecanide which i start next week, so dont know yet how that will be. I only ever had A/F episodes at night when i laid down so i changed my bisoprolol to taking it at night instead of the morning, not sure if itis a coincidence but my attacks have reduced. I just feel that i had to fight to be heard and refered to the right person which is a cadiologist and dont understand why this should be so difficult i think many hospitals and doctors do not understand the effect that A/F can have on your life and dont give it the attention it should have.
Supplements and Lifestyle changes including nutrition/food have an important role to play
I was diagnosed with AF when I went into hospital with appendicitis October 2014. I also have asthma and am a poor candidate for general anesthic. I am 71. I was put on a high dose of anti-biotics and a high dose of cortisone(?) . I was very frightened by the appendicitis and to be told within 24hrs that I had AF made me feel worse, I was given digitalis and warfarin and other drugs which frightened me more. As I was in shock from the whole episode I dont remember any information being given except dont worry, the cardiologist said AF was common and many people lived with it for twenty years or more. I had two cardioversions, the second worked for 13 days. I have also had Echocardiogram and week long and 24 hr ECG monitors. My cardiologist and I agree that there is nothing more that can be done, no ops or proceedures, and I was discharged from the clinic and told to see my GP if anything worried me. I have regular INR tests but have not been told if I need to have other blood tests. When I was in hospital in April this year 2016, for my 4th bout of Community Aquired Pneumonia I was told I had low blood potasium and was treated for that.
I was never told what caused my AF from the onset,
Put on Amioderone for years without being reviewed
And it wrecked my kidneys.
I have had 2 Ablations and one cardio version as they screwed the last one up and tore my heart lining,
Still getting AF
Use a pip now but although it reduces my HR it dies not always control my fluttery. Heart
I was told I had AF and little else,told to go home and see Cardiologist when I got appointment. After second episode in May I was told I was in AF and heart failure. So far I have waited over 2 months to see Cardiologist and have not been allowed to go to work by Gp.No advice given on discharge and no change of meds.
Yes, just about everything I know.
In A+E after my second PAF attack I asked the doctor there what the problem was with my heart racing. She answered with, you could have a stroke or your heart could just give up and stop!!!! This was all I was told about the condition 11 years ago. How times have moved on and thank goodness for this site.
I was not informed that there was an alternate tablet to amiodarone which caused chest and arm pains and feelings of panic. I had to wait 10 months to see a heart specialist (It was 10 years ago). He immediately changed my medication to flecainde which works for me.
I found out that beta blockers and digoxin can make vagal AF worse- I have made GPs aware of this now!! Also discovered that had low potassium levels when in A and E with AF Since taking more in food, no AF (yet!!)
I would have liked to know I could continue taking vitamin K2; that afib is a permanent disease that can be managed so you have no symptoms; that I would probably be on sotalol and warfarin for life especially because the ablation causes scarring which makes the blood pool and eddy briefly in passing and therefore more capable of forming a clot and causing a stroke; that there is such a thing as a coumadin lab where a specialist nurse measures your inr and prescribes the appropriate dose of warfarin on a weekly basis then finally once a month to check that you are okay with this coagulation.;
I was told by my gp at the time not to worry about it and insisted it was nothing to worry about for over 3 years. I was only when I was admitted with pneumonia that the hospital told me of their concerns with my AF? They were noticeable shocked when I told them what my GP had said to me!
It would have been helpful to get some education on the management of the condition with handouts, and in my case future diet and exercise to be looked into.
When you have an episode you are at more risk of blood clots.........You really ought to take Warfarin and not rely on just aspirin to lower your risk of stroke/blood clots!!
Be patient with this rogue it sometimes takes a while to stabilise. Everyone is different. My cardiologist was open and honest at all stages. Read around af and be knowledgeable to ask informed questions
I was diagnosed by GP 25 years ago when the key hole surgery available now was not available. Every time I went to doctor they would say it's not a problem, and it was not until I went to A & E that things were progressed to an ablation procedure which I had last yr. There needs to be more education of GPs about this condition to get proper referrals. Doctors won't act until they catch the condition on an ecg, and that can be difficult!
I agree with most of previous reply. I have had PAF for about 20 years just been taking meds and then anticoagulant added a few years ago.Saw my first Ep
In January 2017 now on waiting list for ablation.All.
I feel I was told very little when I was in hospital after the first mad attack. I was terrified and had never heard of the condition. I wasn't told about any treatment at all, just, take these meds for the rest of your life. Since then (6mnths in) I am seeing my GP tomorrow Ive made an appointment just to chat about it. Plus I think the beta,s are giving me blurry vision. All in all Ive been put on meds and left to my own devises feeling very scared and a bit down in the dumps. This site is very good, Ive realised I'm one of the lucky ones after reading the posts. I still know none of the terminology ablation etc, but I'm picking things up as I read up on here. I don't even know if I'm wasting my money asking to see a elctro physician. Education on this condition has been nil in my case.
I was diagnosed with severe obstructive sleep apnea some 10-years ago whilst abroad. Upon my return to the UK I visited my GP and told him of the diagnosis... and nothing. Some 3-4 years later I started with the occasional rapid heart rate and chest pain which always started whilst I was asleep, back to the GP and again nothing. The episodes continued in frequency to every few weeks and lasting around 2-3 hours. Back to the GP and again after taking my pulse and BP I was told everything appeared ok and there was nothing to worry about. As I was concerned I asked for a referral and was told I would have to pay and get a private consultation. Within days I was seen by a cardiologist who listened to my story and informed me I had AF and that the untreated Sleep Apnea was almost certainly a major contributing factor, thats almost 7 years ago. Since being diagnosed, without a finger having been laid on me I've been "Under the care of a NHS Cardiologist" who I have seen in person a mere 3 times and again without any meaningful tests or discussions said he would arrange for an ablation which I declined in absence of any tests or discussion.
Only now and at my insistence have I had a second opinion from a cardiologist at another hospital who, following various tests and the fitting of a 24-hour monitor has informed me that the likelihood is that I need a Pacemaker as my heart rate drops very low and indeed frequently stops for varying lengths of time, something I have been aware of for many years now and ignored by the previous cardiologist despite having been taken to hospital on a number of occasions by ambulance with the paramedics saying they have never seen anyone fully alert albeit lightheaded with a pulse rate in the mid twenties.
Indeed I did post my symptoms on this forum just over a year ago at which time a specialist suggested I could in fact be suffering from Sick Sinus Syndrome rather than AF and that a pacemaker could most likely fix the problem.
I a nutshell, by all means listen to what is said but don't take anything as gospel, research and understand and in turn make informed decisions ..... this forum is almost certainly one of the best places to start. Remember, its your body, your heart and it should always be your decision with regards to what treatment you undergo .... good luck.
Wish I had the address of this site, and known more about Digoxin and Amiodarone.
I have only been here a short time, and this site has already helped me in so many ways, thank you all ! 
Not sure informed seen it since - Reveal devicelike numerous holter monitors & other tests not revealing what should only PAH 12 years after asked for assistance at the time of the MI .Had the MI after heart failure symptons ignored due to policy [ NO referrals] as relating to possible disability spina bifida [ GPs say not trained about] .
Still have the symptons even ignored by Lung function & Nurses not trained in diagnosing researching & still POLICY NO TESTING? .As for the Specialists who have refused to investigate & plan [ policy too] sending one going from pillar to post then blame as everyone gaining advantage except me having time & finances wasted.What is going on?This has caused virtually no function that can be sustained .
Referral to this forum.
It would have been good to know that PAF is unlikely to be fatal.
Would have been good to know that PAF is unlikely to be fatal.
Any advice, information would have been welcome .I haven't received any from health professionals about my condition either before or since my diagnosis which was by way of receiving the copy of a letter sent to my GP from a consultant advising I be started on medication for AF.
Back to the beginning , having experienced strange episodes for some time increasing in frequency and severity and after waited for 7 months to see a consultant I finally got to see an arrhythmia nurse who in turn spoke to a consultant and he issued me with a letter to take to a hospital/Dr Surgery requesting an ECG during an episode .
I managed to get myself to the local hospital during a severe episode for an ECG then received a copy of a letter from the consultant to my GP advising I be started on a beta blocker and anticoagulant because the ECG showed quite clearly that I had AF.
I attended the GPs surgery and was given a prescription for beta blockers to try to reduce my blood pressure. Anticoagulants
were suggested with me requesting time to do some research before agreeing to take them. The GP wrote the words HAS-BLED and CHA2DS2-VASc on a piece of paper and suggested I look them up before deciding. This I did and my GP spoke to me by telephone to learn my decision which was to take an anticoagulant.
It has been a steep learning curve for me done on my own with the help of the Internet and sites like this one.
I have had next to no information about af - I had to look everything up online. What I really wanted to know was what to expect in the period between hospitalization/ diagnosis and my first treatment. I really feel like I am in the dark.
Me too! I was told nothing.
Beware of anti-coagulants. Warfarin in particular. After eight days of taking 3mg I started to experience alimentary distress, acid reflux and bloody stool. I changed the time of dosage from 6 P.M. to 8 A.M. and like clockwork I experienced a grinding heartburn after three hours. Five hours later I had to relieve myself to clay colored stool. My evaluation puts me at a 4% chance of atrial stroke not the usual 10%. Is it worthwhile reducing a statistically insignificant chance of stroke to practically zero considering the potentially lethal side effects of anti-coagulants? I went to a G.I. and it was determined that I was suffering from a pancreatitis (which took another month to clear up) and alimentary (esophageal swelling) damage. The alimentary distress has cleared up. I'm making an appointment with another physician to determine if there is another anti-coagulant that won't cause contraindicative side effects.
I was told nothing about afib.
I was told nothing!
It would have useful to know to expect ectopics and when is the right point to not just put up with something and take action.
yes....that if I found it difficult to breath and because of this I would not be able to sleep, that this would mean my heart is not pumping efficiently and fluid is collecting in and around my heart and lungs and other parts of my body, which means I need an urgent echocardiogram to see what is happening.......BEFORE the heart becomes so enlarged it causes a leak around a valve and heart failure.
basically - give me the warning signs to INSIST on seeing a specialist!
I would have appreciated the very basic information, such as what to do if my PAF stopped terminating after 2 minutes - when to go to A and E, etc. Also, I had no idea that I should really have seen an EP until I found this forum.
Yes. All about vagal AF
That I wasn't going to die in the next 5 years! cardiologist in Namibia.
That I wouldn’t die from AF, it would just feel like I was!
Like many on this forum, I was not given any information on Afib beyond the fact that I have it. Ten months of being fobbed off by medics and being extremely ill with unsuitable meds I am left feeling depressed, desolate and totally disillusioned with the whole medical profession.
I didn't know what to ask and the doctor didn't tell me what to expect.
Catch your afib within the first six months and you have a much better chance of ablation success.
