I am not usually a fan of forums especially when it comes to health as sometimes you can read too much, but I have been surprised with this community and the great advice fellow AF sufferers have given.
I’m a 41 year old male, who up until last October lived a normal life.
So I was a police officer up until 2 years ago, and I was active and fit as you can imagine. I had been diagnosed with 2 TIA in 2010 and despite extensive neurological examinations and tests the cause was never found. I couldn’t even recall when they might have occurred.
So I was also referred to a cardiologist to see if that area was the cause of the TIA. I was then diagnosed with Bi-Cuspid Valve, which is now monitored annually. My BP and resting HR is usually as good as you would want at an average of 110/70 and 55-60 bpm.
But I constantly had lethargy which over the last few years has worsened considerably. I also get a lot of chest infection despite not being a smoker. Often I feel pretty awful with headaches especially in the morning. I get a lull at around 2pm daily and often find myself falling asleep if not at work.
One day at work I was called to a large fight and I saw a man with a knife attempting to stab another male, so I ran over and began attempting to get the knife from the attacker and whilst doing so I felt a feeling in my chest and I could only describe it as a quiver in my heart. But I had no time to think about it as I was in the middle of a life or death situation. I managed to secure the suspect and after a minute or so the feeling went. I put it down to fight or flight and the adrenaline of the situation. Then one evening I felt the same sensation whilst in bed, but it lasted only 15 seconds.
I was baffled by this and never sought medical advice as it was so short lived on both occasions. I then felt for example walking up stairs and talking to someone would cause me to be breathless. Then one evening last October I got up in the middle of the night to go to the toilet and coughed sharply as I had a bad chest infection. The next thing I felt was the quivering again. I went back to bed and could feel my chest pounding. My HR was at 130 bpm, and I called 99 after 20 minutes. I was admitted to A&E and placed in the resuscitation unit where I was told I had AF. I was administered Flecinaide intravenously and whilst waiting for it to work I felt like I was passing out and my HR rose to 236 bpm. I was asked to perform vagal manoeuvres and it brought the HR out of the 200’s. I was told I would be cardioverted after 6 hours of waiting for the Flecinaide to work.
I was taken to a ward to wait for the procedure as it was a weekend and no one on the decks. Whilst waiting I fell asleep with sheer exhaustion and woke to find myself back in normal sinus rhythm. I was relieved to say the least, and was kept in for 4 days whilst being monitored. I was released and told I would be seen by a cardiologist and that I was to take 2.5mg of Bisoprolol. This did not agree with me as my BP and normal HR is pretty good, so I felt dizzy and was reduced to 1.25mg. I went to work as normal, but found I had a few episodes where I needed hospital intervention. One such occasion was after seeing the cardiologist who told me I could exercise as normal I was jogging and after about 5 minutes I went into AF. Straight to A&E and Flecinaide administered and this time it worked and within 15 mins I went back into SR.
My employer wanted me signed off work and I refused as I felt I could still work, but after another couple of admissions, I conceded and agreed to meet in the middle with reduced hours and light duties. This seemed to work, but again the AF reared it’s head. Then in March this year I had another episode and my employers Doctors told me I was not fit to be at work, and to be fair they were right. I was signed off and met with my cardiologist who stated I was suffering from A-Fib and A-Flutter and as such would be performing a Cryoballon Isolation Ablation and an RF Ablation.
I was prioritised due to my age and work situation and was admitted on 17th May 2018 for the procedures. I was sent home the following day and despite being sore I instantly felt like a new man. Gone was the lethargy that had plagued me, also gone was the bloated feeling I had after every meal no matter how small. I literally cannot recall feeling this good in the last 10 years. Until last Saturday when I thought I could take my young children bowling and had a very brief episode of AF. It reverted quickly, but whilst I knew I had to expect it at some point it was disappointing when it came.
I think every day since I have been getting AF episodes, whether lying in bed, on the sofa, walking. So I have decided to follow complete rest for the remaining 2 weeks I have off. But today I have been getting severe pains around my sternum and abdominal pains so I went to my GP who had a good feel around and believes the Rivoroxoban has caused my intestine to become inflamed. So I am taking 40mg of Ompeprazole as of today.
It’s amazing what a difference a week makes, and I feel both mentally and physically back to how I was before the ablation. I purchased an AliveKor EKG monitor today just to keep a record of when I go into AF. I am off the Flecinaide unless things do not improve, but I feel tired both mentally and physically.
It is so frustrating having two young children and when they ask you to play with them, you either have to say no or limit the amount you do with them. My partner I think is sick of me being miserable and I cannot blame her.
Part of me realises this is a long process and I am more than happy to be ablated again if required, just to get some normality back to my life, but I can’t help thinking “is this it, is this how my life is now?” I find that the hardest to deal with.
Well thanks for reading if you made it this far and I look forward to speaking with some of you.
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Dangerousdriver
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I haven't had an ablation but founded an AF support group where we have consultant speakers every month- topic is often ablation. I've heard them say many times that you have to discount any AF for the first few months. after ablation until the heart settles. Lots of forum members have experienced this too. However, some people have been told to take the flecanide so that AF doesn't go on for too long (as PIP) so to might be good to discuss this with your doctor.
If you do find aF continues you might need a touch up job where the scars have healed and shrunk a little allowing the errant signals to get through again.
I can understand you can't do frontline work but I would have thought there are different areas of police work that would be suitable for you??
Thanks for responding. That’s great to know and interesting having read so many others in my position. I am realistic and not fearful of the AF like I was when it was diagnosed, I do expect to get episodes of both AF and ectopics. I know i’m Not suddenly going to keel over or my heart stop, but nonetheless it is a horrible feeling.
I have found that the AF episodes post procedure are not lasting for hours as they were pre-op and I have been able to use breathing techniques to stop the AF as well something as simple as putting on headphones and watching a film. I’m getting aware that positional changes can also help to stop ectopics and AF.
Having had both RF ablation and Cryo, at least I know what to expect if it’s needed again for a touch up.
I have left the police now and work as a manager in a railway control centre, which whilst not phucally demanding, is i’d say even more stressful than the police which I found to be a doddle despite being exposed to dangers and horrendous sights on a daily basis.
I’m definitely thinking of looking at other roles, to help reduce stress levels as I have realised in the last 3 months of being off that my health and my welfare is the priority.
The Arrhythmia nurses are fab anyway, so I get on to them via phone if needed.
I think I’m more surprised how well I felt immediately after the procedure and was almost led into a false sense of security as now i’m suffering from dull to sharp chest pains, abdominal pain, bloated, trapped wind. I think I feel as bad if not worse post procedure.
I love the irony of your avatar and former job by the way as an advanced driver myself .
Yes life with AF is a long journey but we are a good group who all know what it is like. You are still very early in your recovery from the ablation so please don't be disheartened. It can take three to six months to fully recover and many people are still seeing improvement long after that. If you go to AF Association website under patient resources there are a list of fact sheets and a newish one deals with Recovering from Ablation " so do have a read as you may find it useful. Sounds to me as if you have been well overdoing things. Do make sure that you are taking the Rvaroxaban exactly as instructed , from memory with a meal and not just a biscuit! Many people who fail to do this suffer as you are doing. Best not to take PPIs long term if you can avoid.
Ha ha, yes i’m Advanced like yourself, it’s one of the things that I miss still! Luckily I never had a PolCol, but I like the avatar and kept it.
I’m expecting this to be a long haul for sure, and I think you are right, I was pretty sedentary for the first 7, then went out shopping having had cabin fever. There’s only so much Netflix and PlayStation you can endure! Then I took both kids out without the missus, and the following day to an event where I had AF 4 times that day.
So whilst I am off for another 2 weeks I am doing literally nothing aside from sitting in my pants and pondering the meaning of life.
I have to say i’m not a breakfast man and I was taking the Rivoroxaban and Bisoprolol with a Yakult milkshake which is a mouthful! But after seeing the GP today I am going to take it in the evening with dinner along with another Omeprazole. I have been getting sharp temple headaches in the three months since beginning the course of Rivoroxaban, but am aware it is one of the side effects. I guess the pro’s outweigh the bad in this case.
I’ve been on the PPI for about 7 years now sinc eI was diagnosed as having TIA as I was on a daily Aspirin. I hate them, but with reflux and Hiatus Hernia also I know when I don’t take them I wake up with bile on my mouth on occasions which is awful!
Great story and welcome. Glad you are improving and hope it continues.
Once you start taking with a full meal all the side effects should go. I don’t think the doctors, nurses or pharmacists emphasise just how important this is. A friend had similar problems and her bloods started to show irregularities as she was taking in the morning with a light breakfast - as soon as she took at night - everything calmed down and went back to normal. Taking with high number calories (at least 300 calories - Actimel is about 199) is important for absorption so if it is completely absorpbed - it won’t irritate.
Taking PPI’s long term is not good. You can reverse acid reflux and in some cases hiatus hernia with adjustments to your diet and eating plans but the main difference comes from increasingly your gut and stomach bacteria. Personally I take kefir daily and avoid most carbs as they always worsen acid reflux.
I suffer from acid reflux horribly! Maybe some people get relief from simple diet switch but waking up with your stomach acid in your throat and the acid burns in your alimentary canal is not fun to say the least. And once it burns you like that—it takes hours of excoriating discomfort to calm down that pain. Horrible pain and discomfort.
I always take my anti-coagulant with my fattest meal and with 10 ounces of water. I take the PPI 2 hours later. Oh, I’ve tried lots of diet changes to get away from PPI and NOTHING works other that PPI. I stopped eating anything but veggies and meats a month ago and reflux still kicks in horribly so. I’ve tried every diet under the sun to rid me of PPI dependency but to no avail. I will take more probiotics to see if it helps but can’t take fermented anything or vinegar based probiotics.
It is horrible but the latest research does show it is caused mainly by bad balance of gut flora. I had a full GI gut flora screen and it showed up 2 ‘bad’ flora which probably caused the problem, I was prescribed 2 supplements - one based on high concentrations of Tannin - after 2 months most symptoms disappeared and 12 months later I’ve had no more problems. Getting the gut flora right is difficult and not just about taking probiotics because my range of ‘helpful’ bacteria was excellent - it was the bad stuff which caused bloating and acid reflux.
The biggest difference after that for me was to stop eating carbs - especially at breakfast - to eat protein and fat - so fruit and yogurt or egg and bacon - just lose the bread and cereals.
I know it doesn’t work for everyone and I do know just how painful it is. I refused all PPIs as they do make things worse in the longer term. I found sipping hot water helps and if very bad - liquid Gaviscon - which you can get on prescription but is OTC med.
Hi,thanks for your post,you are right ,no one has emphasised to take rivoroxaban with meal,all I have been taking it with is a biscuit in the morning,I have got bloating and burping all the time,so shall try with meal,but is it still doing what it supposed to do if I don’t have with full meal,which some days I don’t,thanks
If it isn’t absorped properly then the efficacy can be reduced by 75% is a statistic I read recently - so no it wouldn’t do its’ job.
The recommendation from our AF support group is that you need at least 300 calories of which most should consist of protein and fats,
I don’t think a full meal is required but a substantial meal. My friend found as soon as she took with an evening meal rather than breakfast - everything resolved.
Yes I accept I have done too much too soon, and as such will be throttling back on my activities for the foreseeable. As I mentioned, the first week where I expected to feel at my worst actually was my best week and I had no symptoms, including reflux, trapped wind etc. So I guess I thought “This is great” and did too much!
But, we never stop learning and this is one lesson I definitely won’t repeat.
You have really gone through the mill and your story is typical of many of us here. Scary isn't it. Yes you really must rest then rest some more. Very frustrating when going from a healthy active life to accommodating a heart condition but keep looking forward to getting back on track.
Things will improve and patience is the watch word, hard I know. You are young and you have that on your side. Plenty of years ahead of you where medical advances will be made and new drugs and procedures will come on stream. Research is ongoing so please don't think the future is bleak it's anything but. Like all of us you are on a journey and have some good companions here. We would all prefer not to be on this journey but together in mutual support we will prevail.
Keep your chin up life will get better hold on to that. Take care.
Thank you for the kind words of support and encouragement.
I think as many of you will have experienced, we have good and bad days. And often it seems as though there are more bad than good and I think the mind is one of your strongest allies, and foe in some cases.
Some days I forget about it, then suddenly BOOM! It’s a kick back to reality and all the good feelings fade.
I am getting on top of my symptoms slowly, but even as I type this I have had this dull ache in my sternum all day and despite seeing the GP this morning and her reassuring me, it’s still disconcerting to experience it. I suffered some discomfort in the chest a few days after the procedure, but last week it went. I don’t know what’s brought it on today, or if it’s even cardiac related. It could be my Hiatus Hernia for all I know, but I’m going to try and get to bed and get a good nights sleep I think and hope I feel better in the morning.
I had quite bad gastric problems after ablation including the dull ache you have, acid reflux and bloating. I’ve had quite serious gut problems from my early 20’s but nothing quite like that.
I found out later that the TOE performed before the ablation got stuck and caused some damage. Ablation goes very close to the oesophagus and I think this can also cause these symptoms as many people suffer these side effects post ablation, they do go eventually but for me - 6 months. Also had a dry, irritating cough during that period.
Hey brother. I’m a police officer too here in the USA. I’m lucky enough to work a detective/desk job where I’m not putting anyone at risk with Afib. My advice would be to try and land an assignment where you aren’t running around in the streets at night.
Yep I’ve realised maybe it’s time to take the slow lane and see how I get on! I’ve always been flat out day and day out taking calls and dealing with the finest mankind has to offer. I’ll pm yo regarding my police related issues that most likely resulted in the AF coming for ford full time. Glad you are still able to work albeit in a different role...
It's quite worrying when we first hear that we have AF, as usually at that time we have never heard of it! I remember waking in the middle of the night with an attack thinking that the way my heart bounced away in my chest I was sure to die or have a stroke. That was 13 years ago and I'm still here! What I've learnt over the years is to give AF as little attention as possible. The mind is so very powerful and any worry/stress will feed your AF and make it stronger.
I noted that whenever I had an appointment with my cardiologist or EP I was always well and once cancelled an appointment only to have an AF attack the next day. If I wore a heart monitor for a week, well I knew that that would be the time when I could climb mountains and feel full of life and energy.
Unfortunately it takes time before we can become blasé about our condition, but it does happen over time and you settle into a pattern of knowing the routine. I've had three ablations and countless cardioversions and have now been in permanent AF for around 7 months. It's nowhere near as bad as having the isolated attacks I used to have and what you are experiencing now.
Rather than sit doing nothing at the moment, I'd recommend you do some light chores - things that require no effort like washing dishes/dusting and a favourite thing of mine is going out in the garden with a pair of secateurs and a bin bag - no bending at all mind. I snip off bits of hedge and chop them up immediately, then as soon as I get the slightest bit tired I can stop and there's no clearing up to do. Your partner will be very pleased with you too and that eases tension.
I completely agree that the mind of one of most powerful aids to recovering from them is condition. But I am also aware it can also be your worst enemy at Rome’s. it’s striking that middle ground between being blasé and anxious.
I certainly don’t think I’m going to suddenly shuffle off this mortal coil, but at the same time I find so many aspects of daily life are limited now.
I have been doing housework etc and a bit of tidying up the back garden and yard. I find some days I’m more tolerant than others. Yesterday was awful and I had a constant ache in my chest, but today I feel ok.
Yes, it's strange how our days can feel so different. We wake up in the morning and have no idea what energy levels we'll have that day. It makes it hard to plan ahead.
Never, ever push yourself at this early stage after your ablation and always stop when you know you've had enough. In between ablations, I'd get days of high energy, they were rare, but when I had them I'd race around doing as much as I could. Almost without fail I'd have an attack of PAF that night or next day, which would wipe me out for ages.
Actually we don't talk much on this forum about that - how attacks of AF can wipe you out energy wise for days or weeks once they're over.
I agree this forum is amazing in the positive support, experience and advice it can offer. Please look after yourself and give your body time to heal after your ablation. I wasn’t aware of this forum 18months ago when I had my ablation and consequently pushed myself too hard too quickly and now am on a waiting list for a second one. I believe if I had read the information on here back then I would have made different choices.
Many people here will be able to emphasise with the feelings of despair felt on days when AF is at it’s worst. But equally messages of positivity, lifestyle adaptation and longevity provide inspiration and new ways of coping.
Well I’ve definitely learnt a lot on here already hence why I felt it was time to tell my story and I now realise I’m just one of millions of us out there with the same daily struggles. And I’m aware it could always be worse.
Thank you for the kind wishes!
Hi ! As you are new to all this I would recommend having a look at Dr sanjay gupta's you tube channel lots of advice on lifestyle to reduce AF ! Give your ablation time to work and assist your recovery with good diet, sleep and stress reduction ! Best of luck !
Funnily enough I found his YouTube channel last week and have been hooked! He’s amazing in the advice he gives and very relatable. You get the feeling he actually understands aspects of AF that are often overlooked such as the reflux and stomach links etc.
I had ablation in November 2013. It took 5 months for heart bumps and arrhythmias to settle down. Since then no more af. Also my resting heart rate stayed elevated for nearly a year. So stay positive, go for some short walks and build up gradually.
Try fruit and yogurt for breakfast and no bread in the morning. That has helped my stomach problems.
Thanks for advice, I’ve notice my resting HR is up from 55 to around 65-70 now. I’m not worried, it’s just the heart adapting I guess.
As for eating to better help the stomach, I now have live yoghurt and bananas for breakfast. That way I’m keeping my gut health intact and it’s healthy. I think it’s the best way forward
I was prescribed Lansoprazole after my ablation (it is a precaution against reflux irritating the oesophagus further) but soon developed diarrhoea so I was put back on my regular medication which is Ranitidine. Unfortunately I went on to develop diverticulitis and nearly lost a large section of bowel. This may have been coincidence but I suspect PPIs upset your gut flora especially if you have antibiotics with your ablation as I did.
Sorry to read your story. Although AF is not life threatening if on blood thinners it is life changing and reading your story reminded me of the loss /changes you are dealing with. Hope your AF settles and you can make necessary lifestyle changes adjustments. I am sure your job would be very stressful.
Yes, it’s not easy to process at first. On some occasions I’ve thought i’d almost rather lose a leg and learn to adapt than go through the rest of my life limited by this condition. But then say to someone who has lost a limb and they’d probably say they’d rather AF!
And that’s what we do isn’t it? Adapt and find a way round our problems. Things might be different, but it’s still life and I have to say I appreciate every day.
I’m really sorry you are feeling so dreadful. I have been through the same with my husband. Trust it can and will get better. You really should have rested longer after your ablation. It took my husband nearly six months to recover fully. Just s patient. Easier said than done I know.
This forum has helped me during my time of need. I understand your partners frustration because i have been through it with my husband . Rest and let your heart recover from it’s odesls .
Don't give up hope for the ablations at this point. It is very common to have episodes for several months after. I had Fib and Flutter ablations in early March, so about 3 months downstream. My EP put me on Flecainide and a Beta Blocker post the procedure, and I am just now starting to work off of those. Reason for medications, I believe, is to limit the number of episodes one might have during the first few months after a procedure. Know another person who is staying on RX's for 6 months.
My EP said I could go back to regular exercise, golf, etc a week after procedure...which I did. Due to the beta blocker keeping HR down, and just recovering from the procedure, I experienced shortness of breath and definitely didn't feel normal....but didn't feel terrible, either. Had a lot of "weird" sensations in right side of chest and neck for quite a while, but those have all now subsided.
Have had a couple brief incidents of flutter/fib which both went away very quickly, and apparently are viewed as "normal" post ablations.
Now 3 months out, even though still on meds, I feel much, much better and basically back to normal...except beta blocker still keep HR down when exercising.
As many have said on this forum, it does take probably months to fully recover from ablations. However, not sure it was harmful to resume activity a week after the procedure...that is often the advice for orthopedic procedures, etc and you don't feel well right away, but helps with recovery over long term....have no idea if that is the same for ablations, and probably no evidence either way. However, you have other complications with the intestinal issue, so taking it easy if don't feel close to normal seems to make a lot of sense.
Your bi-cuspid vs. tri-cuspid valve could add a layer of complication as well, yet I know someone who is nearly 70 with same issue, and only now are they looking at a replacement and it has not caused major issues over many years.
Also, given your relatively young age compared to many of us on this forum, if you end up needing further treatment in the years to come, it will likely be much more certain as to results and less invasive. Our EP participates in studies and new procedures and was explaining how quickly technology is moving forward. Already, he is installing certain replacement heart valves via catheter....drop in a new valve above the existing one, and don't remove the existing one.....previously open heart surgery would have been required. He may be somewhat overly optimistic, but stated that in 10 years we will all be amazed at how much cardio treatments have advanced and how virtually all will be done without major surgery or treated with drugs.
I am also involved with some bio/pharma/medical device companies, and seeing the same thing about rate of change in medical advancements generally. The "good news" about arrhythmias and other heart issues is that millions of people have them, and the potential financial reward to bio, pharma and device companies that can solve these issues is very large. There is undoubtedly a lot of research $ going into this area, which typically leads to new solutions. A condition which is less prevalent may have trouble attracting sufficient R&D funding to move it forward quickly...shouldn't be the case here.
Hope you start feeling better soon...don't give up hope as you are a very short time period from your ablations!
''There is undoubtedly a lot of research $ going into this area, which typically leads to new solutions''.
..Indeed barabas we had a post a while ago about a study just about to begin in the Netherlands..
''The Phase I study is a randomised, double-blind, placebo-controlled single ascending dose study to assess the safety and tolerability of AP30663 in nearly 50 healthy subjects. It is expected to be completed in June 2018 with the data anticipated by the end of August 2018. It is being conducted at the Centre for Human Drug Research (CHDR) in the Netherlands.
Having had my ablation on the 2nd of May after years of AF problems, I too could not believe how well I felt after, but having been on this forum for a while before my ablation, I read with a lot of caution of what not to do, so I have had a very relaxed month with an hour long AF episode on day 6 and a few ectopic beats
I, too, was born with a bicuspid valve (as was my son). In addition, I have rheumatoid arthritis which, I have since found out, can cause AFib, GERD, and shortness of breath. My first symptom of problems with the bicuspid aortic valve was AFib (I didn't even know what that was at the time). I soon had a valve replacement and a patch put on an aortic aneurysm caused by pressure from the worsening aortic valve. Please have your heart valve checked regularly (usually an echocardiogram sometimes with a stress test)! It could be causing some of the symptoms you attribute to AFib and, if ignored, could lead to the strokes you have had. Each doctor sees only one piece of you - be careful. Only you know all your symptoms and don't be afraid to bring them up. One symptom can have many causes and you may need to see a different type of doctor, especially if you are having joint pain.
I know how frustrating and disappointing AF episodes can be. I had them off and on for 20 years! Medication helped, but just when I thought I might not have another episode, I had one. I finally had the cryoballoon ablation on July 13, 2016. I had an episode 8 days afterward, probably because I went back to work too soon. The last one I had was May 5th 2017. It was probably caused by Prednisone I was prescribed in the ER for and allergic reaction to an antibiotic. I still take my medication by choice. My cardiologist said it’s up to me. I take a lower dose, but I figure stick with what’s working. I used to go weeks or months without an episode before my ablation, but I would inevitably have another, usually in the middle of the night. I hate afib! I can’t tell you how many days were pretty much ruined by it. From age 38 to 58 I was tormented by it. I’m 60 now and so glad it’s gone. I’m happy to hear yours is gone too. If I ever need another ablation, I’ll do it. Let’s hope we never have to. Sincerely, Deadwoodmike.
Dangerous driver I hear you loud and clear. Afib if a life changer in many ways. You are not alone in feeling like this. Lots of uncertainty and anxiety goes with this condition. Finding support is key. Here in the states there are not any support groups around me but maybe where you are you can find one. This support forum certainly helps. Always here to chat if you need.
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