hi I’ve recently been diagnosed with PAF , it’s taken two 48hr monitors to detect it finally. I believe I’ve had this for nearly three years now always during the night usually about 2am to 9am .
recently my episodes have become much more frequent and at different times of the day which can be really uncomfortable and a little scary .
I’ve not really had a chance to talk to a cardiologist since these attacks have gotten worse and I’m not on medication as the attack that was picked up lasted only a few minutes.
I guess I’m looking for some advice/ reassurance and some tips on how to handle this new chapter of my life .
thanks in advance.
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That’s good advice, when I first got the diagnosis I panicked but once it settled I relaxed into and almost forgot I had it , it getting worse recently has triggered my anxiety. Thanks for your reply.
I was the same age as you when my AF was first diagnosed. What I did was call my Dr's surgery while I was having an attack and say my heart was beating oddly and I didn't feel well. They told me to come down and have an ECG right away. Of course by the time I arrived there it had slowed down a bit, but was still high. I was prescribed beta blockers. I suggest you do the same and call your Dr's surgery when you're having an attack.
Slow, deep breathing can sometimes calm the heart. I found, after years of suffering, that artificial sweeteners and additives would trigger mine. Take care not to wear any clothes that are tight around the body and try not to sit slouched. Sulphites (preservatives) in wine are another common trigger
I think I'd had my attacks well before that age too as I used to suddenly get periods where I felt really tired and had to sit down for 5 or 10 minutes. I used to say, "I feel weak and weary". It became a great joke for other members of the family who often mimicked me. Well they didn't laugh when they realised I had a heart complaint!
You're among friends here who understand exactly what you are experiencing with your AF.
Unfortunately my GP wants nothing to do with it and is leaving it up to the hospital and my cardiologist to deal with !!! Thanks for your reassurance though .
I try not to get involved with my GP at all, sadly it is a source of anxiety and a possible trigger. I have found the consultant’s secretaries to be very helpful and approachable if you have any questions between appointments.
I’m also pretty sure I was having episodes for some time before diagnosis. I wasn’t even looking for anything wrong but thinking back I used to get days when I felt a bit jittery if that makes sense. The first I knew was when my watch which I’d had to monitor my walking during the pandemic alerted me to possible AF. Then taking an ECG with the watch confirmed AF. These gadgets are not for everyone as they can cause more anxiety than the worth of it but I have recorded every episode since using this and have a good idea how long they lasted. They certainly have a place for helping get a measure of your AF burden but they do not capture it all automatically like the 48hr monitor. While in one of these episodes I was able to get a 12 lead ECG at my surgery the same day which officially confirmed AF and recorded on my record.
You will get plenty of reassurance from this forum and you will learn if you haven’t already that everyone is different. There is lots of helpful information on the main AFA website, I would have a read and then ask any questions you have here.
I would start with the patient information booklet, here’s a link
That’s useful information thank you . It’s the uncertainty of when an attack will happen that’s driving me crazy , my worst fear is one happening at work where I can’t sit and control my breath and relax , my Gp has not been helpful at all and insists I wait to hear back from my cardiologist!
I would be inclined to go to your GP, and maybe see if you can be referred to Cardiology. If you do want to try to go down the route of having an ablation, then it’s usually more effective to have one earlier rather than later. They might also suggest an anti-arrhythmic drug to try to prevent/stop the episodes.
The saying goes that ‘AFib begets AFib’ so that it progresses. I think that I had it for several years before my diagnosis. So that it was lasting for days. I had an ablation at the end of last year, but it didn’t work and I was told that they would have needed to pick it up years before.
I’m actually doing ok in permanent AFib, but I do have beta-blockers to slow the rate down. Also anticoagulants - but that is because I am older.
I believe I’ve had it for 3 years but never showed up on ECG or it stopped when I went to A& E the first time and I was told it was probably ectopics . Thank you for your response.
Welcome - You are a similar age to me when I was diagnosed so I ask myself what would I have told myself at that stage?
Read as much as you can about AF and it’s treatments.
With knowledge, ask probing questions and don’t hesitate to challenge if you think you are being fobbed off, politely of course.
If you can afford it, think about seeing an Electrophysiologist (specialist cardiologist) privately - well worth the money for an expert opinion.
Sign up for the AFA on line series - Living with AF.
Look at Lifestyle before trying any drugs, even if you decide to take drugs or treatments, if you can tweak your Lifestyle and increase your fitness you will have much higher chance of having successful management and hopefully elimination.
I think of AF as a symptom rather than a condition so look at controlling any other conditions you have, especially hypertension.
It’s normal to be scared on diagnosis but 16 years of AF and although I have had to adapt and give up things like offshore sailing and scuba diving and skiing and am not nearly as active as I was, we still travel, am reasonably active in an every day way, I don’t allow AF to stop me doing things I want to do but it’s at a much slower pace and I have to pace myself but then I also have a neuromuscular condition which tends to limit exercise ability as I have muscle weakness and have a lot of fatigue.
You will find lots of knowledgeable and very supportive people here so don’t hesitate to ask questions.
that’s very good advice thankyou, you seem to have the right attitude and mind set . I think not seeing anyone face to face is not helping I’ve only had a 10 minute phone call with a cardiologist. I’ll take your advice and just keep on living my life and not let this get me down thank you .
Welcome, sorry you had to join our club. I have PAF probably for a few years before diagnosis, probably caused by endurance training. More frequent this year. That said, I got a lot out of a book called the Afib Cure which covers all the advice which you will see reflected in this forum. The thing that made the most difference for me was giving up alcohol and magnesium tablets. Alcohol used to have me waking up in the night with my heart pounding and that never happens now. Also, before I finally got it diagnosed by the NHS, I paid for a private cardiologist to get some specific advice about me. The tests privately are expensive though. Now I am in the NHS system I am heading for an ablation. Just had an MRI this week, angiogram later in Dec and waiting for a stress test date. After that, I am told the ablation will be about 4 months. That seems quick to me given the current state of the NHS so we’ll see. Which is a long way round to be saying get a hospital referral as soon as you can because the consensus seems to be that the sooner you have an ablation, the more likely it is to be successful.
Great advice, I’m under a cardiologist at the moment so I just need to be a little more patient by the sounds of it . I’ll look into that book you suggested, I have given up alcohol and caffeine now for 3 years and it did help , I’ve got additional stress in my life and I’m sure that’s not helping!
Congratulations you have found an excellent place for reassurance and information, read all you can. Book a private appointment with a cardiologist (ideally one recommended) and in the meantime keep a diary of your activities, what you eat and drink, AF episodes and how you feel. Useful info to discuss with all medics.
Since diagnosis I have made many lifestyle choices (some forced upon me) and determined to make AF a driver for a better, healthier and longer life as a result.
Great attitude to take ! I started off feeling like that but as the episodes have got closer together and for longer I’ve let the anxiety take over . Glad you are handling it so well and I’ll take a leaf out of your book
Best to be seen by a Cardiac Specialist before your diagnosed AF causes a stroke as you not on medication or anti-co.agulant Mine was caused by a tiny clot.
You give no details of your BP or H/Rate avging Day and Night with a 24-hr heart monitor.
A BB. Beta Blocker couldn't CONTROL my rapid persistent AF. First Metoprolol which kept me at avge 186bpm. I was breathless, fatigued, tired and had pauses at night with an avge H/R of 47. At 1 year 3 months I had enough and asked for a follow up of Heart Specialist. So changed but 8 months on Bisoprolol up to 10mg my H/R was 156. Still uncontrolled.
My Locum Dr talked to me to see a recommended private H/S. He introduced CCB Calcium Channel Blocker Diltiazem 180mg. Proved too much - shot down my H/R by 105 in 2 hours.
My blood pressure is normal and when I get an episode my heart beat can vary between 90 / 145 when moving . My usual resting heart rate is about 65 bpm . I’m looking for more help from my cardiologist.
Having been on the PAF journey I might reflect on what I have learned.To put some context I am now nearly three years AFIB free following a successful RF ablation.
My heart is structurally sound and absent some sport injuries was in good health.
Initial diagnosis was hit and miss until I had a loop recorder. After initial diagnosis I was placed on beta blockers and zarelto. Hated beta blockers, dropped pulse so had telemetry pacemaker inserted this made life bearable and provided real time logging of AFIB load.
I was initially in denial and rationalised I could make life style tweaks that might help.
Foolish me.
My EP explained the journey and it ended up exactly as he predicted.
I freaked out when I read up on an RFI ablation so tried some things mostly emphasising hydration trying to avoid the inevitable. Waste of time
After initial diagnosis it was two years to an ablation.
Now I am AFIB free, left the pacemaker in, part of a trial, another story.
Only thing I have done life style is cut way back on alcohol now no more the 10 std drinks a week.
Like yourself I am recently diagnosed with very short episodes of PAF; longest lasting under an hour. I panicked at first and quickly sought reassurance and advice from members in here.
You will see that everyone’s experiences are different and therefore everyone’s advice will be different. It is reassuring to hear what others have to say but try not to draw parallels and align your experiences with others to make a decision on medications or procedures. People may have other medical conditions not disclosed which means different treatments. My advice is get a face to face with GP, get an echocardiogram to make sure your heart is sound and go from there.
Like yourself I am not on any medication and none is being suggested nor is any medical procedure being offered or recommended. Both GP and cardiologist who identified my AF have said due to Chads vasc score being 0, then lifestyle changes are the best thing rather than medication or procedures with a review in 6 months. This is because of my age -60- otherwise healthy, no diabetes, good BMI and a structurally normal heart. The cardiologist wrote to me and said no anti coagulants were recommended or prescribed as stroke risk is very low.I have chosen to follow advice on caffeine, alcohol and sweeteners etc but that’s it.
For some good explanations and advice watch York Cardiology videos on YouTube.
I’ve also been classed as low risk, my last 14 hr episode scared me a little and I’m hoping to get in front of a cardiologist soon to establish a way forward. The York cardiology videos have been amazing and has offered me some reassurances. Good luck on your journey.
As you've already been advised, we're all different. You have PAF i.e. you have AF episodes (I have PAF too but prefer episodes to attacks) and they are triggered by something, which may or may not be within your control. When you have an episode try to document the circumstances, food you've eaten, physical and mental state etc and search for possible triggers you can try to eliminate from your life. This includes things you've been eating or taking for years. Only a few months ago I realised the antacids I been using on and off for years might have triggered an event - and in hindsight might have triggered a number of events in the past. I am currently avoiding using them but will trial them again in due course and see what impact stopping and/or restarting them does on the frequency of episodes. To complicate matters, reflux is a potential trigger for AF episodes, so I still need to deal with it otherwise I might just be trading one trigger for another.
Look for a device like a KardiaMobile 6L which can use to do an ECG whenever you feel like you're having an episode. It should be able to tell you if you're having an episode or reassure yourself that you're not. They're not expensive, easy to use, keep a history of your episodes along with notes about what you were doing etc and the ECG can be shared with your GP, cardiologist or EP.
I was diagnosed with PAF in 2019 but had been having issues for a few years. I suspect the "issues" were undiagnosed AF episodes. At one stage I wore a holter monitor for 24 hours and was diagnosed as having ectopic beats. It wasn't until I turned up to Emergency one night while having an episode that it was caught on ECG.
I have medication twice a day (25mg Metoprolol and 150mg Flecainide) for my AF and I can go for months without having an episode. However, if I don't actively avoid my suspected triggers I could have several episodes in a month, despite being on maximum daily dose of Flecainide. Other events outside your control can also impact your AF, e.g. I had several episodes last year while I had Covid and in the months following. My cardiologist said that's quite common.
The bottom line is that you should know more aboutyourAF than anyone else. Your doctor and cardiologist might know more about AF but they won't know you and your experiences better than you do.
If you are proactive about it then I believe you can keep your episodes to a minimum and delay or even avoid progressing to permanent AF.
I’ve been keeping a diary for a few years and they had a familiar pattern for months . Always at 2am and would be over by 9am and just once a month . I’ve given up alcohol and caffeine also . Great advice, thanks very much
Not much to add really, it sounds as though your AF burden is relatively low and let’s hope it stays that way. If necessary, lifestyle changes will certainly help but if the number of episodes continue to increase then medical interventions should be considered to minimise the risk of heart enlargement. Assuming you have no other health issues, at your tender young age, it shouldn’t be necessary to take anticoagulants but you should familiarise yourself with CHADsVASC for future stroke prevention. Try hard to get professional advice, apart from the obvious, physiologically it helps and that’s important too.
What is important is to know that provided your AF is controlled, it will not shorten your life and although it might have some effect, most people go on to lead relatively normal lives……..
Having read your bio I can identify with everything you say. At your age I was told I was anxious (I have a medical history). However after several holter monitors over several years fibrillation was picked up and diagnosed as AF. My strong advice is to discuss this with your GP and ask for a referral to cardiology. Initially I was referred within four weeks to a prescribing nurse but then as AF was more frequent ( this is what it does) my GP prescribed Bisoprolol and Flecainide which helped over several years. I now await an ablation and I’m on different meds. You should also ask whether an anti coagulant is appropriate. Also buy a Kardia if you can. It attaches to your mobile and you can take a reading. Useful for future conversations with medics. Also ask for an echocardiogram to look at heart structure.
A long reply but being proactive in this will help you deal with AF if it gets worse.
Welcome to the Forum, I am sure all our members will make you welcome and offer you advice based upon their own experiences. Please feel free to contact the AF Association Patient Services Team if you have any questions or information: heartrhythmalliance.org/afa...
At the eventual diagnosis of my pAF (like you, delayed by a year or more), I was very fortunate to have my first ever serum Vitamin D blood test, which revealed a worrying simultaneous deficiency of 22 nmol/L. I have since raised my level to around 100-125 nmol/L, and as a consequence the frequency of my AF events are much reduced. And recent reports indicate Vitamin D deficiency is much more prevalent than previously thought, in all age groups, not just the elderly like me.
And as Vitamin D deficiency is implicated in all kinds of arrhythmias and health issues, please ensure you know your Vitamin D level going forward on your journey. With knowledge of its importance to your AF, you should be able to insist on such a blood test via your GP.
As a starter for you, here's an article about Vitamin D and Mortality risks ...
But you need to know what your current level actually is in order to evaluate how your supplementation is working, or not. And with your AF diagnosis, you should be able to insist on an NHS test via your GP. My GP has now agreed to test my Vitamin D yearly, which is obviously much better than the previous and usual frequency of "never". I think this test is slightly more expensive than others, which perhaps explains GPs reluctance to routinely request it as I think essential for all patients, not just those with an AF diagnosis.
There are so many different Vitamin D preparations available online (it's a bit of a minefield of claims and costs), that ongoing monitoring is essential to see how a particular preparation is working for you individually.
I seem to be OK at the moment with a daily capsule containing 4000 iu D3 + 100mcg K2.
And remember UK NICE recommended adequate levels of serum Vitamin D, according to my reading of current research, are woefully out of date compared with other "advanced" countries. (Much too low in UK)
The potential relationship of Vitamin D with AF is interesting. I started taking Vitamin D last year as evidence mounted of its positive effects on dealing with Covid. My wife mentioned it to our GP at the time and he thought it was a waste of time. Evidence now would probably make him change his opinion. The importance of adequate Vitamin D levels for a range of bodily functions cannot be overstated
Agreed NICE guidance is woefully inaccurate on that subject, we increased our intake during COVID and only decrease in the summer, I’ll check out my GP but she is reluctant to do blood tests for anything!
Having had afib for 32 years the best advice I can give is; this may be a trial and error attempt to find the best and right medications or procedures that is going to suit you and help you the best, and to always stay in touch with EP & Drs. and let them know how you feel (concerns, worries , anxiety's) whatever they may be, because if you don't tell them they won't know the next step to take, and for you to have a positive attitude and outlook. Once they find the right combination of meds or treatment then just go with the flow and continue to enjoy life. Have a Beautiful Day.
You really need to see a cardiologist, better still an electrophysiologist who specialises in heart arrythmias. You really need to be medicated and to be honest your stroke risk assessed as you are 5 times more likely to have a stroke with afib.
I’ve got a cardiologist, he seems to think my risk is low because my blood pressure is normal and my cholesterol is low ! He also suggested that being female put me at lower risk . I’m feel like I’ll be the one doing all the chasing, I’m waiting on a scan now .
Please don’t think I am deliberately being argumentative but why do you say that “you really need to be medicated”?
There are lots of people with AF who, on the advice of a qualified cardiologist, have no medications or treatments. Do you dispute the advice of someone whose expertise is in this field?
I am under a professor EP who is recognised over the world as a specialist in heart arrythmias and sudden cardiac death. Irrespective of age, the risk of stroke is 5 times higher in those with arrythmias than the general public. When I refer to medication I mean anticoagulants to reduce this risk. My brother ( who didn't know he had afib) suffered 4 strokes before being diagnosed. I know of younger people who have also suffered a stroke. My EP is very clear on the risks for anyone with afib. I certainly wouldn't want to take that risk
I hear what you are saying and don’t necessarily disagree with your opinion. However, do you and your professor then think the age element in the world wide accepted Chads Vasc score be ignored then? Genuine question?
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