Hi everyone. I've just had a very frightening episode of PAF lasting over 8 hours and which saw me fearing I was dying of a heart attack. I ended up in an ambulance going to A&E where I sat being monitored for over 10 hours. The AF stopped spontaneously after about 2 hours, and before the doctor got to see me. That experience has brought me here.
I'm now anxiously researching everything I can find about AF, and there are lots of conflicting descriptions of it on the internet. It seems to me, after only a day or so of reading, that there are two distinct versions of this problem. AF of the persistent kind, which often has little to no symptoms, and AF of the sudden onslaught (like mine) which is quickly debilitating and frightening.
Having been lucky enough (!) to still have the AF evident when I was put onto a monitor by the ambulance crew, I have missed some of the misdiagnosis that can happen with this problem, but I now realise that I have had milder versions of these symptoms on occasion many times in the last few years.
My first, important, question is: What should I do if I have another attack before I see the cardiologist I am being referred to?
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momist
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welcome to the forum- it is very worrying when you are first diagnosed but of course it is much better to know what is wrong as then you know what to do,
The main problem with either type of `af is the stroke risk and this will depend on your age and other possible medical issues. You can work out your risk by looking at the CHADs Vasc scoring system on the AFA website, If you have a score which indicates anti-coagulation is needed, that is the single most important thing to organise.
You may find your next episode is milder-I had what seemed like a heart attack for my first one and the subsequent episodes were milder as I stopped all caffeine.
You will get lots of advice and tips from the very helpful people on the forum but the main thing is to keep calm and remember AF is not, in itself, life threatening. Cover your stroke risk and you are taking the most important measures
My main tip is to check you are having enough potassium in your diet and increase the foods needed if not. Also a Magnesium supplement ( my GP prescribed) to balance extra Potassium intake in diet. This has worked for me- others will give other tips re what to do in an episode
PS to last reply- AF can come and go (PAF) be persistent, i e you have long periods when in AF- or be classed as permeant which just means you and your doctor agree not to try any more ways to get back to Normal Sinus `rhythm
They are not all debilitating and each form can exist with varying degrees of symptoms- some lucky people don't know they are in F whereas others have a lot of difficulty. Do go to A and E if ever you are being badly affected- it's best to be monitored in a safe place.
Thanks Rosy. I am learning about the stroke risk. Some sources say 4x and others say 5x the risk - that alone is scary. However, that's not my main worry just now. My bad experience was triggered (I think) by a stressful family situation followed by some very heavy physical work to a tight deadline. That job remains unfinished, and I now have to get back to it as soon as I feel able to. What should I do if it brings on another attack?
The stroke risk will, I hope, be addressed as soon as I have seen the cardio people and get some medication for my condition. I expect that will take some time, and I'm due to go away for a week very soon.
Just to focus on your direct question about what to do if you experience another attack before you see a cardiologist I think I'd say that if it makes you feel really ill and/or lasts more than 2 hours then it would be wise to call for an ambulance and go to A&E. I think calling for an ambulance is better than going under your own steam. The paramedics will take an ECG and also take you straight through without any need to hang around waiting to be seen.
I do think it is important to modify the risk of a stroke by taking an anti-coagulant and - if my own experience is anything to go by - I was prescribed one in hospital after my second visit to A&E since paroxysmal AF was then confirmed.
I know how hard it is but do try not to worry too much and rest assured that you are among friends here who understand what you are feeling right now.
Thank you Carole. That is exactly the sort of thing I was looking for here. This event seems to have knocked my life off the rails. I have tickets for a beer festival tomorrow and probably shouldn't be drinking at all, but then I need some R&R and that would just fit the bill. The weather forecast is great as well!
@BobD, I think it is, has a great saying: "I may have AF, but it doesn't have me." That alone helped me to feel a whole lot better about my life and the impact of the AF diagnosis. So .... enjoy the beer festival and the sunshine BUT take it easy on the beer! Alcohol is a known trigger for lots of people here.
I am seriously thinking of buying the minimum number of tokens, and giving some away. I'll also take along a very large bottle of water to alternate with the beer. It's a family thing as well, so it would be a shame to cry off entirely.
I agree, you have PAF and until it is fixed, you have PAF. There are many triggers of which alcohol can be one but if like me, you love your Real Ale then, why allow the whole PAF thing to completely ruin your life. You have to be sensible and I would go for the pint of water idea prior to the session. I think you need to be sensible over the strength of the beer you try but as somebody else mentioned recently, I also gave up on trying to determine the triggers because, PAF is totally random. I think the only thing I confirmed was that drinking on a really hot day when you are likely to be slightly dehydrated is a high risk for a PAF attack. Preparation for a Ringwood 49er is everything.....enjoy, but keep away from the Trappist.
Good advice there. I'd be encouraged by the fact that you went back into normal rhythm and that's what could (and probably will) happen again. Your heart may not go astray again before your appointment.
As it will be a worry if you don't do the strenuous work that needs doing, why not test the theory that it set things off but go gently and don't push your heart into misbehaving. AF is fickle and it can happen when you don't expect it and doesn't occur when you think it will.
Thanks Rellim, I think you have given me the encouragement I was needing. I'll go slow, stay hydrated, and keep a check on my pulse at intervals. If it happens, I'll stop.
I recently had 2 episodes of AF after a period of not having any. I narrowed the trigger down to strong coffee causing dehydration and exertion on physical exercise. Keep hydrated.
Yes Stefcon, I like my morning coffee strong. I only have one a day, generally, and drink tea at random intervals. I've heard it said that there is more caffeine in tea than in coffee, but never believed it. I was certainly not stopping to drink water during the work I was doing, when I should have done. Lesson learned there! I had also had a full fat Coke (very unusual for me) as my lunch had left me thirsty. Maybe that was a contributor too?
From my own personal experience (although it took me a while to admit this) stress definitely plays a part. I have accepted after a long journey that PAF is a passenger in my life, and have taken steps to lessen the stress in my life. Stress will always be there, but you learn to deal with it better.
Good advice above and you are obviously researching. May I suggest you stick with the AFA website and download all of their excellent information.
You could ask to be referred directly to an EP (Electrophysiologist). Do the research of who you would like to see and then ask your GP to refer you. There may be a wait on the NHS so if you have resources you may consider a private consultation. EPs specialize in electrical problems of the heart whilst cardiologists focus more on structure and plumbing.
Keeping calm and stress free is really important with AF and I would strongly recommend that you adopt a daily practice of relaxation/meditation/mindfulness. Look at breathing exercises which slow your breathing down to 6 beats a minute or less.
Stress is a trigger for AF so learning how to cope and even prevent stress will probably benefit you as much as any treatment as fear is the big enemy as it will only increase the intensity and the frequency of episodes.
Look at vagal AF - some people find they have AF opwhen they relax whilst others during or after exercise or a particular food or drink produces a reaction - it happens quickly so you will be in no doubt. If so look at increasing vagal tone - quite easy exercises. Also look a vasovagal maneuvers which can sometimes (not always) put you back into NSR if you do as soon as AF starts, sometimes works for me but the best is slow, easy breathing with my legs higher than my heart.
Check out the videos that Dr Gupta, a cardiologist and sufferer, posts on this forum as he explains things very well. You can do a search for previous threads on the Posts page.
Don't hesitate to ask any questions as there many experienced and knowledgeable people on this forum and there is nearly always someone around to help.
I can't add much to CDreamers comments other than to make sure that you stay well hydrated. And by that I do not mean beer. coffee or tea. lol All these actually reduce your hydration so it is important to drink plain water as well. In warm weather or during hard labour or exercise at least two litres a day.
If I were you I would avoid alcohol for a while as many people do find it a trigger but that is up to you. Paroxysmal AF when it comes and goes is often very distressing due to the constant changes in rhythm being so noticeable. Those in permanent AF are often asymptomatic and unaware of it until the stroke which cripples them so you are one of the lucky ones who are warned and can do something about it. 5 times is generally accepted as the increased risk but 5 times what is the critical thing. For that you need to do your CHADS2CVASC score so go to AF Association web pages and work it out. DO NOT wait till you see you cardiologist. Speak to your GP as soon as possible PLEASE for your own sake.
Thanks CD and Timmo. Yes, I know I need to control my stress levels better, but the more I try, the harder it seems to do. Or else, the older I get the harder it seems. I've been doing Tai Chi weekly since 2001, together with my wife, and the Qi Kung element is very like a form of meditation. I have no doubt that it helps me, but one session a week is probably not enough. I'm wondering if beta blockers might be appropriate.
Hi Momist - Tai Chi & Chi Kung are excellent and you can use the slow breathing techniques from those exercises to do 5-10 minutes of calm breathing - try to reduce your breath rate to 6 breaths a minute or lower.
Focus entirely on breathing whilst placing a hand over your heart Centre - usually feels a little hotter than surrounding area to your hand - at the same time as imagining an image which represents balance. Then just repeat to yourself the word calm.
Use the same exercise if you have a repeat experience.
If AF is triggered by the vagal nerve there is a purely physical element to the anxiety - the above exercise helps to calm and tone the vagal nerve. Obviously worry thoughts will increase the anxiety - good idea to look at CBT for those and MoodGym is a great starting place.
Thanks for that link CD. Sadly, I have had little knowledge of CBT, but have met several people who seem passionate about it and they were all of the personality type I would always try to avoid. Self important egotists. No doubt this has given me some prejudice which I need to work through. Yes, the practice of Chi Kung is very good for clearing the mind and calming down, but when you are scared already that becomes very difficult.
And that is the purely physical feedback from your autonomic system - which is exactly why learning to self-sooth the fight/flight response is so important. You are receiving sensations from your autonomic system that is telling you there is something wrong - putting you on high alert = we call it anxiety.
Understanding exactly what happens can help because the breathing technique then gives a positive bio-feedback - helping the body to return to homeostasis.
CBT is particularly good for worry thoughts - it is a simple analysis of noting your thoughts, examining them to see if you are 'catastrophising'
e.g.:- I feel palpitations, breathless and tired - this means there is something wrong with my heart - that's serious and means I might die.
Then find a challenge to that interpretation - I feel palpitation, breathless and tired -
e.g.:-that is a signal that I may be in AF - what can I do which will help? I could do the breathing exercises which will be calming and may help my AF.
CBT means cognitive behavioural therapy and is about as polarised from Analysis - which is Freudian and IS based on the ID or ego - as you can get.
Beta blockers could be right for you. My GP prescribed them and warfarin during the 12 week wait to see the EP for the first time. I felt a bit woozy on 1.25mg bisoprolol but it slowed things down and was better when I took it at night. I was in persistent AF and having many bad symptoms (persistent AF is not symptom free in my case). And at times the AF would flare up and get worse and the nurse at the arrhythmia clinic told me to take a second 1.25 bisoprolol on those occasions. It got me through the waiting period and might help you. Learning not to panic is very very hard, but it helps.... but you already have lots of advice about that!
Thanks Janet. I thought at first that beta blockers might be useful, but in the week since my PAF I've not had any measurable AF, only a pounding in my chest some times at normal rhythm. I'm still waiting for a referral.
It might be handy to have them as a pill in the pocket. Then if AF started you could take one. It's good to make it stop asap. I had PAF for ten years about 3 or 4 times a year always lasting only a few hours. But it gradually got more often and longer till it became persistent. I wish I had taken the pill in the pocket earlier!
Yes I have used Flecainide as a PIP. But you need to have tests to show you have no other heart problems before you can have it.
At first taking 200mg straightaway stopped AF in 6 hours quite a few times. But then it didn't work and AF set in for 3 weeks. Then I took 300mg a day plus extra bisoprolol for two days and on the third day I woke up and the AF had gone. I was sheduled for a cardioversion and had to cancel it!
I also have PAF and several times like you lasting many hours.
Have not had an episode at all since 2015 after the Cardiologist prescribed 300mg taken all at once using it as pill in pocket only when an episode comes on.
I have to take it 10mins after an episode starts within 20 mins to an hour,back to normal.
More confidence knowing I have it with me at all times.
Also it can take take up to 8hrs to work,if after 8hrs it hasn't,advised to go to A&E,but this has not happened.
Worth asking about on your visit.Good luck,keep well let me know how you go.
Hi. Just a little thing but would like to correct those who suggest permanent AF is more or less asymptomatic. I'm in permanent AF and VERY symptomatic. It's had / having a horrible impact on me and my ability to live anything like a normal life. It's caused my atria to expand, I'm in heart failure, I have a single lead pacemaker so my atria is competing continuously with the pacemaker settings. I'm not moaning, I've accepted where I am but it's not a trivial disease - it kills. It killed my aunt, my grandfather, my mother.....
Welcome to the club! The first thing you need to understand is you can and will live with this - likely for a very long time. Med's may help, or your EP may see fit to ablate your pulmonary veins in an attempt to "cure" your AF.
The next time you have an episode just relax. The more you stress the more it will persist. We all live with this - at least with paroxysmal bouts. Going to the ER is a waste of money and resources. Rushing to the doctor will not convert you unless he wants to cardiovert you. That process is likely futile if you are likely to convert on your own.
Me? I had PAF for several years. Scary? Sure? Pain in the ass? You bet. I would take metroprolol and just wait it out. Usually converted within 6 to 8 hours. The stroke risk is nothing to sneeze at so we had a plan - any bout over 12 hours and I was to take a xeralto. I never had to do that.
I finally started having enough episodes we decided to do an ablation - it took two to get me in NSR and I've been lucky to stay in NSR of the past 20 months. Good luck!
I think people should feel free to go to A and E if they have troubling symptoms - clinicians advise this is high heart rates are involved and it is better to be monitored
Okay. But if you are already on meds and you rush off for each episode you are likely wasting resources and time. If you are new to AF and it makes you feel better then go, but not someone who is just having a bout or two here and there. Of course, YMMV....
Hi you have come to the right place the people on here are so helpful and have a lot of knowledge.There is a search box top right hand corner which may also cover some of your question. when I first had AF I went to see an EP privately it was the best money I have ever spent. I was seen within two weeks and put on the medication I needed. it will take months with the NHS(not their fault) but if you are in a position do that then the sooner the better.
Hi there all. Well, the gamble (if you call it that) has paid off. I thoroughly enjoyed the beer fest, had several progressively stronger and tastier real ales finishing off with a Canadian Brown Ale brewed with Maple syrup in the mix at 7.5% abv. Lovely stuff. Only five halves in total, with plenty of water to wash out the glass between flavours.
I can still type (with the spell checker on), and I did not trigger another session of AF. At least, not yet. I am really of the opinion that last Sunday's event was triggered by an excess of anger and stress, together with a lack of hydration and anxiety over pushing to get the work done before dark. Tonight, I feel relaxed and happy.
I did check my pulse a couple of times during the night, 76bpm on the last count. Nice normal rhythm.
Thank you all for your support over the last few days. Without this forum and the marvellous people here, I don't know what state I might be in by now, and probably would have cried off this night out and be worse off for it. In fact, I might still be terrified!
I'll lurk here for quite a while, unless another 'event' comes along. Thank you again.
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Oh, but the Trappist is nice! Yeah, message received, and wish me luck tonight. I'll report back if I have triggered anything. Thanks Rich.
New diagnosis of rapid AF mid October
Another first
Just (another) thought.......
