What a great resource but having flicked through lots of posts and having both finformed and worried myself along the way I thought I'd ask the question about the start of your AF journeys, early experiences and what would you have done differently with hindsight?
A little background I am female 57 and already taking thyroid meds (under active) and warfarin (episodes of Pulmonary Embolisms 10 years ago). I went to the GP this week after a terrible bout of what I thought were palpitations - I have episodes before always put down to thyroid meds or stress etc nothing ever showed on ECG. This last bout was different it Dr suggested investigation for Afib and of course I came home and googled and it's been a bit of a lightbulb moment. GP very relaxed about it all ordered blood tests but although I was having skipped beats etc my HR was low throughout never above 77 despite the panic......
The worst of it was overnight and I think it took about 48 hrs to fully settle into rhythm was getting obsessive about taking my pulse and don't know if this helped or hindered. He didn't suggest ECG as I have had two (Dec and Jan) following the last spells....
I have the reassurance thaI am on warfarin and reasonably stable INR so I suppose as long as I can tolerate the skips and flutters I should not panic, I will probably have to have holter monitor but then what.....? I think I know without diagnosis that I prob have Afib and it has been present for a number of years - I remember symptoms during the menopause and certainly times of emotional stress. Sorry long post but I know there's some done out there to help calm me down and take charge
Sue
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I was 58 when diagnosed with persistent AF, and was dumbstruck when it happened to me, I literally thought I was going to die any minute, and despite joining this forums predeccesor on Yahoo, and being told to calm down, relax nothing is going to happen it took me about 4 months before the words of BobD and others finally began to sink in.
For me the biggest shock was going from never going to to doctor unless dragged kicking and screaming to what I think was 30 visits in 3 months (inc blood tests etc) I had to be REALLY ill to go that often.
Of course nearly 5 years later and still here and living my life, and to be honest AF is no longer a big part of my life. It's still there every day, all day and all night, but I just get on with life. Knowledge is key here, go and read as much as you can the AFA website is amazing, and read a lot of the posts here. We are a diverse bunch with differing views, but we manage to bump along reasonably well.
I was diagnosed with PAF two and a half years ago, after about 7 years of funny bouts which were never caught on ECG's or in visits to my GP. I like your description of the lightbulb moment - like you I had to google the diagnosis and found out very little until I joined this forum.
You are so right about taking charge giving confidence and I found that knowledge and understanding of my particular type of AF was the way in which I started to feel less terrified and started to think.
With hindsight I would have approached the original diagnosis differently - 30 second ECG's are wonderful but not if they are trying to catch an elusive beggar like PAF. Even a 24-hour monitor, echocardiogram and stress test were evaded by the dreaded episodes. I would now ask for an event monitor or a 7-day one and explain my reasoning, with my GP's backup if necessary. Another thing I would now do differently is to negotiate my drug therapy - why that drug? why that dosage? - so that I had serious input to the way my AF was managed.
Having said all that, for me, the drugs are working at the moment - no AF in nearly two years and no feelings of being afraid to go out, about to conk out or having a heart attack. Stress and worry do make things worse and I suppose we all do get anxious at times - the trick is to put it all into some perspective - and that comes with taking charge and feeling in control of the condition, and not the other way round.
Thank you both can I ask the first of what might seem a silly question..... I think I definitely did have some kind of serious event in the week small hours of Wednesday and since then I have felt a bit strange but my heart rate has not speeded up or dropped ( range 66 - 76) can you have Afib but no change in heart rate?
I am concerned that I'll end up on the production line of 'this is how we treat it' before getting the chance to reflect on options.
Ian I've looked at some of your other posts - self testing on the warfarin resonates, it is an anomaly to me that self testing is regarded as some kind of witch craft when all we want to do is look after ourselves and stay safe 😬 I've been on it for 9 years and have been OK for the most part but there have been times when I've felt unwell when the reassurance of knowing my INR would have been helpful. It's proven that self testing keeps people in range 90% of the time - it makes sense but no way according to my GP. Anyway trying to remain positive as you can imagine I've already taken myself down the road of every conceivable outcome
Sue, I can understand what you are saying about the 'stranger event' but everything seems normal. I've not had an AF episode (that I can detect) for a month, but last week I felt one of those ectopic beats and for about an hour after that had this funny feeling that AF was about to start. My pulse remained normal, both regular and slow, yet I didn't feel right. No pain, no dizziness, nothing, just this unsettling feeling, it's just hard to explain. I did what I normally do and that is lie on the bed in a sitting position and do deep breathing. The feeling would go and I'd feel okay, and then it would come back again. Eventually it went and I could continue my day. There may have been an element of panic attack in there as well, because if I find the deep breathing isn't working, I can get that brief flash of panic. Unfortunately, I don't have an answer for you other than to state I understand what you were feeling, the signs are telling you that you are okay, but you don't feel it.
Thanks I should say that I haven't been diagnosed but there was something v odd going on beyond the normal run of ectopic type beats I've had in the past. Was like a fight going on in my chest...At the moment occasional skips but hr 68. I'll v strange and trying to keep the panic at bay 😕
A fib is far more common than this government and the NHS will admit. Its on the increase I am told including younger people. Not to be taken lightly - its scary for the sufferer especially those folks who live alone
Ah, moments like these I wish we could just meet n have a coffee. Sometimes I think a chat with someone who really understands and has felt the insecurity of odd heart beats could ease the confusion and aloneness. My advice is to check and double check advice and medications. Your medical professionals are part of your team but you are in charge. Keep learning.
Awwww thank you yes that would be great - I am overthinking things and getting stressed, heightening the senses 😖 We are due out at friends tonight's for a meal and whilst I don't want to go I need to make the effort hopefully take my mind off things. I have had palpitations in the past but this was something different. Thank you for your kind words x
For what it's worth ... my introduction to the world of AF was flutter that started quite suddenly while I was in the middle of a solo 10-day wilderness canoe trip. That was in May of 2013. I was breaking camp and noted that I got dizzy quite easily and my heart rate was pretty high - 120bpm (it went higher as the day wore on). After an hour of observation I concluded I was not having a heart attack, but whatever was happening seemed serious and I should probably get to a hospital as soon as possible. That was two days away, at the earliest.
Was I worried, anxious, panicked? No. I was concerned. I figured if I died I wouldn't care any more. But until then I would do what I needed to do and find out what my new limits were in the process. I put the symptoms up to leaky valves and went on my way, paddling 8 miles and carrying my boat and gear over 4 portages. The next day I traveled 10 miles with another 4 portages, and then drove to the hospital an hour away.
The flutter converted to NSR with the help of a drug or two and I drove the 8 hours home the next day. An ablation followed in April 2014, with another ablation a year later for paroxysmal AF. I've had no arrhythmias since then.
My point is that you can choose your response, no matter what the circumstances.
Thanks for replying anxiety isn't helpful I know. The blessing and the curse of internet I have swallowed too much information! I don't want to decry our NHS but previous experience has not always been positive - one day at a time I suppose.
You're most welcome. I was speaking to your comment that you're looking for someone "out there" to help you calm down and help you take charge.
Anxiety is helpful if it leads you to see how it's created, and then how it can be alleviated. You take charge when *you* decide that *you* are in charge, and then act on it.
Anxiety and panic arise from a dark sense of helplessness, the fear that one has no control over something dangerous and poorly understood. Taking charge throws light and reveals that you aren't helpless at all, you have great power that you weren't aware of.
I wish you a happy and fulfilling journey on the path of discovering your power and its many transformative uses.
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It's a long story, but I'm as unnerved now as I was at the start.
How long before ablation to start Edoxaban?
The same lifestyle actions starting & stopping AF
Starting on Flecainide
