I have been in and out of hospital complaining about palpatations for years, had several 24 48 and 7 day monitors and nothing really showed up just eptopic beats and it got to a stage I'm convinced the cardio doc had enough of me because he said it's basicly " anxiety" my last letter from them essentially said we don't want to see you again. Three weeks after the letter I was taken into A and E with an erratic heart rate jumping from 160 to 230 bpm and after a few hours they was going to do a cardioversion but thankfully my heart went back into rythem. I was told it was afib and sent packing with beta blockers and told I would be referred to cardio.
After 3 months I went to my appointment and was from the minute I walked in just told again it was all anxiety causing eptopic heartbeats and I felt the doc was just dismissive about everything I said about all my fears and symptoms. I asked if the afib would get worse and essentially got a shoulder shrug with no explanation about anything. He did send me for an echocardiigram that all came back normal but then he prescribed me flecainide 50mg to take alongside the beta blocker only now reading the info on the flecainide I'm terrified of the list of side effects, particularly the chance it could worsen symptoms or even cause death... I feel so lost and alone I feel the doc didn't believe anything I said and I've just been nothing but a nuisance. Problem is I still get awful palpatations that are incredibly uncomfortable and unnerving somtimes my heart feels like it's going back into an unusual rythem but then goes back to normal. I feel like I'm going mad with the palpatations because even the cardio doc doesn't believe my symptoms are that severe. The last thing I want is to waste the docs time or be in this situational all. Sorry for the rant I know alot of you folks have it worse than me but like I said I feel at a total loss.
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Pepsicoke
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You already documented your afib in the hospital and now have every right to seek treatment. I would get a copy of your ekg showing atrial fibrillation and find an electrophysiologist (ep) that will treat you with the respect you deserve.
I understand the NHS is very backed up, but a number of members here have had a single private consultation with an ep at a somewhat reasonable price. That set thrm on the right path, treatment wise and in many cases, got them on their NHS list for any further needs.
I would also suggest you get a home Kardia device or Apple Watch, to further document the frequency and duration of these episodes.
If you go this route, I'm sure members here give you some suggestions on who to see.
As far as wasting doctor's time is concerned, if they make you feel that way you're wasting your time with them. They are not good doctors.
You're not the first to go through this terrible experience and unfortunately not the last.
I am so sorry that you have been treated in this manner .... but ... wherever you are on Planet UK you are entitled to and damn well deserve better treatment than this. In my case I have little faith in the skills of my GP or indeed my surgery. The only part of my GP surgery I have any respect for is the INR Clinic and its team of great nurses.
I have read Jims post replying to you and pretty much agree with his comments. My heart is generally well behaved these days but every 4 or 5 years ago it kicks off, mugs me but settles down. Early 2024 was a case in point and this time ( because of my feelings about my GP and the surgery ) I did just what Jim referred to, and so really glad I did.
I Googled for a Cardiac consultant where I am in Cornwall and got a number of them. The one I chose was a guy who did his training and spent his early career at Groote Schur Hospital, Cape Town, South Africa ( where years ago Dr. Christian Barnard and his team carried out the worlds first heart transplant ) who was practicing at a private hospital nearby here in Cornwall It meant going private and couldn't really afford to dip too deeply into my retirement pot of gold but decided to anyway. Best move ever ! Sorted now and back on the straight and narrow and am trying to get more exercise and give up booze ( beer and wine ).
I know I'm not a serious cardiac cot case for this Cardiac Consultant in the world of heart issues but the two features that struck my wife and I was his caring attitude and seemingly the quality of his advice. I have an invite to make a follow up appointment in 6 months time.
If you are interested in going private and are fearful of costs let me know, give me a few days to look through my bank statements and I'll get back to you with a breakdown of what my adventure cost me. Damn well worth it.
My heart issues started with high blood pressure way back in 2007, so rather than drown in Cardiac Tech stuff I have just a quality blood pressure machine, a wrist watch tracker and a Kardia device ... is all!
Finally, if you are really hardnosed and tough you could make a formal complaint to the Care Quality Commission. I had a serious complaint about my hospital treatment a few years ago - which bordered on practicing ageism - but I copied in my Westminster MP requesting he take the matter up with the then Secretary of State for Health ........ jeepers, did that get some results.
Anyway, Pepsicoke hope this is of interest and helps you.
When I rung the Practise of my new Heart Specialist suggested by my Locum, he told me to get this dr Locum to refer me as it would save me a heap of money.
He referred me back to the hospital heart specialist for tests - one he wanted a 24hr heart monitor on me to check the new CCB Diltiazem med for control of my heart rate.
I even received a Christmas Card from him! Lovely. I saw him early in December.
If you're referring to the caring attitude of your specialist, I thinkyou'll find that is the general trend among all doctors in South Africa, Here, very few work for the government in public hospitals and clinics, but are in private practice. Because of this, if they want to make a living , they have to be nice to their patients who will vote with their feet. I think this attitude is ingrained in them, even Chris Barnard worked as a GP in Ceres before returning to Groote Schuur were he became senior registrar, completed additional qualifications and became famous ! We returned to England for a years after our son was born, to make up out minds where we wanted to settle after being in South Africa for 4 years. I needed to see a doctor when I we were in England and I could not help noticing the difference, - he treated me like and inconvenience and made some ridiculous observations. The contrast between his attitude and the fantastic GP I had left in SA cannot be described. We returned to SA !
I must say I'm very biased toward the southern hemisphere. Most of my life has been in Australia, although well over a century ago one of my grandfathers brothers and his family migrated from Norfolk, UK, to Kimberley, S.A. one of their kids was born and grew up in Kimberley and went onto became a South African Test Cricketer - William Victor Stone Ling.
So when I discovered this S.A. Cardiac Consultant right on my doorstep the choice was simple. Little wonder I love international test cricket between S.A. and Australia, little wonder I love southern hemisphere red wines, S.A., Argentinian and Chilean. Purely from a heart health point of view though. 😱😱
In reassurance if the heart specialist is reading your echo before he prescribed flec you should be OK on it.
But when given to folks with an abnormal heart e.g dilated atrium, faulty valves or. ventricles not working well your heart may not like it. It is an anti-arrhymic med which tries to put your heart back into normal sinus beat.
I was diagnosed with stroke, rapid & persistent AF. Then 4 days later when having a carotid arteries scan a shadow showed up on my thyroid. Yes proved papillary thyroid cancer.
Thyroidectomy in 4 mths.
My heart day was 186bpm no exertion on Metoprolol and pauses at night. I hadn't wanted it but was dsregarded. Left on it my left atrium is severely dilated. So no cardioversion, ablation or flec.
I have CCB Diltiazem 120mgCD AM for control of rapid heart and it acts like a safe anti-arrhythmic med.
BB Bisoprolol reduced to 1.25mg last week for control of BP.
Strangely my normal Night heart rate is 47bpm avg.
Have you had your thyroid checked through a scan. It could be objecting going into hypo or hyper. My levels were normal.
Another thing to check beyond your heart as trouble with your thyroid can cause aF.
Hi Jason,I was prescribed and Flecainide at the maximum permitted dose (300mg) for 11 years without any side effects. I wasn't prescribed a beta blocker like Bisoprolol because I am also asthmatic.
Pepsicoke itself has caffeine in it which can cause problems with AF, as can tea and coffee. I found I wasn't affected by the caffeine in tea or coke, but some other ingredient in coffee caused problems with my AF, so I gave up drinking coffee 17 years ago.
You've had some good advice here. The ECG from the hospital indicates you do have AF. You may well also get ectopics, which are sometimes just as uncomfortable as AF - and sometimes not. Do you think it would help you to have your own checking decive, such as a Kardiamobile? I find mine very useful. If you have a paid account it will analyse ectopics (usually harmless, despite the discomfort) as well as any AF.
As to the Flecainide- it's an anti arrhythmic and can be very effective. You'll find some here get on well with it (I did) and others not.
Have you had an echocardiogram to look.at your heart structure? That is a must if you are on Flecainide.
Overall it sounds like you need a bit of support, plus some knowledge to help reassure you. Naturally you're anxious - it goes with the territory! Doesn't mean you don't have a heart issue and it doesn't mean you should be dismissed and treated with disrespect.
You can talk to the Arrythmia Alliance people on the phone for advice - did you know that? Call them on a weekday. They are very helpful.
Don't worry about the Flecainide. As said above, if a cardiologist has checked your ECG and echo for the adverse indicators of it, it's safe to take it. I've even been put back on it 7 years after a heart attack, which used to be a no-no, but my echo and ECG said I was not in the risk group. You should also have an ECG after going on Flec to check the same signals say it's alright. The leaflet side effect warnings are pretty much for people with characteristics which mean they shouldn't be on it in the first place.
Beta blockers have very limited true anti-arrhythmic effect, their main role is to slow the heart if you're actually in a fast AF, and to reduce the the strength of the pumping, which can help to reduce how badly you feel the palpitations. In my view they are too often used as a first-line therapy for AF, but that's more relevant to older folk who also have heart disease as the underlying cause of AF. Some in their 70's and 80's I know are on BBs, in permanent AF, and it doesn't really bother them. Your history of palpitations suggests you're not in that group.
As others have said, try to find an EP, as my experience with that speciality has been nothing but excellent
Anxiety is one of the main drivers of AF and other arrhythmias along with obesity and high blood pressure. But diagnosing your problem as anxiety without explanation or reassurance is totally unhelpful. You end up in a downward spiral of symptoms - anxiety - worse symptoms - worse anxiety…… So if you want to share your fears here most of us have been through your experience in some way and can try to help ❤️🩹
I’m sorry to read about your experiences of having your symptoms dismissed. I had a problem of increasing ectopics ie constant, every few beats. which progressed to my first AF episode that I was aware of. I was able to catch on my Apple Watch. I had my first “proof” of AF. It took 12 months for the diagnosis to be confirmed.
Like you, I wasn’t taken seriously by the GPs. In fact one of them had my outpatient appointment at the cardiology clinic cancelled, but I persevered and I was able to take my AF recordings to that appointment.
As I have had a “moderate” and “moderately high” ectopic burden recorded on a 24h ECG I’m always going to have ectopics on the recordings, but they never picked up AF because I have paroxysmal AF and it’s easy to miss. The only time it’s been caught by any “medical” test is when I had to call 999 when I had fast AF at 200+ bpm which was awful. The paramedics caught in on their machine, but had converted to NSR when I reached A&E. However, that recording carried some diagnostic weight for when I saw the specialist EP a month or so later.
Beta blockers and Flecanide are the first line treatment for AF. If you have fast AF it’s important not to have your heart going at such a high rate for too long as it’s not helping your heart do its job efficiently.You can take Flecanide as a pill in the pocket for when you have an episode but if you are experiencing more frequent episodes then you might want to try taking it regularly starting with a low dose. How you manage it depends on your AF burden, not what someone on an internet forum says. Ideally you should discuss this with your consultant but if you’re not being listened to after everything you’ve been through, then it might be an idea to see a private specialist as others have suggested.
Flecanide should be safe provided your ECG and echocardiogram (or any other tests eg MRI) don’t indicate structural disease. I understand your apprehension but the leaflet in the package lists all the worst case scenarios that have an outside statistical probability, hence you always need to go by YOUR test results.
There are plenty of people on this forum who take Flecanide to control their AF. Ablation is an option but like ALL treatments whether drugs or surgery, it’s about risk v. benefits. Surgery carries its own risks, although most people are fine. However, ablation isn’t a one-and-done solution for everyone. Some people are lucky, yes, but there are others here who have had three or even more ablations. Some live with permanent AF and live their life, some have had a pacemaker - and they live their life. We just have to deal with our situation as it applies to us, and do what we think is right for us.
Lots of people will jump in with lifestyle advice and that’s great for your overall general health, but there are many roads to Rome, as they say. Diet, exercise, sleep and stress management is what you need to look at. There is no one right diet but the basic tenets of healthy eating apply. Find a way of moving your body that you enjoy. Learn any relaxation/meditation/breathing techniques that you can get along with and practice every day. Don’t skimp on your sleep if you can help it. Consistency matters. If you don’t like doing something you won’t stick to it. This won’t make you AF-proof though. Just because you have AF it doesn’t get you an exemption from developing another condition later on in life, so look after your overall health. You don’t need to spend money on expensive diet apps or any of that.
hi pepsicoke. I was diagnosed with AF September 2022 following first episode on last day of stressful 2 week holiday (late July 2022) (motorhome holiday never again!!)) and just working too hard (in the NHS). I had worked through the pandemic and supported my husband when he was made redundant at that time and so took every private referral as well. (I’m a psychotherapist). By this time I was diagnosed with high blood pressure high cholesterol (which had been missed by GP in February 2022) I also had Covid six weeks before the first AF episode. A bit of a précis of situations but don’t want to bore you.
Anyway NHS didn’t really get going with support and I spent many hours in A&E with what I found out eventually was AF. I saw a private cardiologist and prescribed Flecainide 50mg x2, apixaban (now edoxaban) 75mg losartan following wearing a heart monitor for a week and also being diagnosed with mitral regurgitation. Now flecainide 50mg in morning and 100mg at night losartan 75mg. I feel pretty stable on this medication. I also feel AF, for me anyway, has links to stress/anxiety and the vagal nerve. I have been diagnosed IBS and have had this for many years. Yes some food links but also stress/anxiety links.
I havent noticed any side effects taking flecainide. I also take it pill in the pocket 50mg and 2.5mg bisoprolol which has brought my heart back into sinus rhythm. I have a very occasional glass of wine and have caffeine up to lunchtime more for sleep
For me seeing a private cardiologist even for a few sessions really made a difference in understanding what was happening for me, feeling supported and listened to and generally reducing my anxiety around this condition. Hope my telling my story of AF and flecainide helps you make some decisions etc around what you do yourself
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