AF Association
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What is an AF episode? Please describe yours and how you know.

I have PAF , its under control with digoxin, I read the extremely useful post about AF triggers and it made me wonder about what mine are. But I dont know as I am unsure if I have episodes now? (Is this possible?)

Before I was diagnosed I know I had palpitations every night in bed before sleep but thought that was normal.

I know from time to time (usually, but not always, when stressed or rushing (face mainly?) I sweat alot, is that an episode?

How does an episode make others feel?

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You may well have episodes that you know nothing about, especially whilst you are asleep. A 7 day monitor might well show episodes if that is the case. Some people have no symptoms whatsoever - they probably don't realize that they are functioning below par.

Since my ablation my episodes are mild. I can feel that my heart is irregular, I may feel a bit breathless, hot around the face, listless and generally rough. I can quickly find my carotid pulse in my neck to check if it's irregular.

My main trigger is stress. Currently I am suspicious about intake of sugary foods causing a "sugar rush."

PS I do not have a major rate problem. I think the maximum ever clocked was 140. My problem is all to do with rhythm. My blood pressure is low- normal.

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AF makes me feel as if I have just very narrowly escaped hitting something catastrophically with the car. I feel shaken, with my heart noticeably fast. I can function almost as usual, but the heart is hammering away. I don't get breathless or sweaty or needing to pee and can appear to be fine as long as I'm wearing something that hides the palpitations.

Like jennydog, I don't have a major rate problem and rarely go over 140. My AF tends to slow and calm over the next few hours and I find it hard to tell when it eventually stops.

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AF is a very mongrel condition and few commonalities exist as WE are all different.

AF presents as a highly irregular pulse , either fast or slow but usually fast, easily felt on the wrist which is why pulse checking is so important in primary care. Rarely it may include chest pain and fainting but normally just palpitations which of course can often be felt more when laying down to sleep.. A shortness of breath, fatigue. exercise intolerance. dizziness etc are all possible as is excessive Peeing. Many people find during events that they have to go to the loo every ten to twenty minutes. This is caused by an enzyme which the distressed heart produces telling the body to get rid of salt.

AF is easily recognised on an ECG.

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Re going to the loo... this all makes sense now. Thankyou.

My heart has gone to 169 ... extremely high from what I gather .... but meds seem to be working better now

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We don't do top trumps here but 169 is average and many people go well above 200.

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Mine was like a curse, it was 230 the first time I went into ER in afib. Sweating and my legs felt heavy just to walk. My chest was aching, I had began into congestive heart failure, although I was having problems for over 2 weeks not knowing exactly what was wrong. I thought I was just overworked...too many hours. 70+ a week.

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Thank for that . It was merely a personal observation.

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Hi susan I always know when my af starts i get a feeling in my chest whilst breathing and i quickly check my pulse at the wrist and then i know yes its back!!my pulse is regular but fast and its roughly around the 130 b.p.m..episodes last anything between 5 mins. And the longest in recent times 2 hours.i can tell its stopped and back in normal bpm of around 60/65

Its as if a switch goes on then goes off when its had its evil way with me.!!

Its not the easiest thing to descibe its just a weird experience which continues to pee me off but from being on here i know lots of folk get it worse than i do.

Regards

Richard

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I'm never aware of AF unless I'm wearing my heart monitor chest strap and I'm exercising on my rowing machine. It's not so much the high heart rate but the amount of change and the time span between changes. Downloading the results shows a relatively smooth heart rate if I wasn't in AF, whereas AF produces a spikey line.

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John-Boy

- you seem to have a similar version of AF to myself! I only found out I had AF owing to my chest strap HR monitor. I only notice the arrhythmia when it starts - I get some big arrhythmic heart beats for 30 secs to 2 minutes and then I go generally straight to 120 -130 then it climbs from there. When first I noticed I had a resting HR of 160-170. Above 90-100 bpm I cannot feel any arrhythmia, although it shows on an ECG and my BP monitor. Neither does it affect me - no pain nor breathlessness. I have seen 220 - 240 on my garmin when running and I only stopped because I saw the scary number! Do you know what starts your AF? I do not . I found out early on that if I went for a run , the HR shot way up for 8-10 minutes - very spikey on the Garmin trace then dropped down to a more normal (for me running) -140- 150 and a lot smoother. When I stopped running the HR dropped down to 90 pretty quick, and the returned to normal low 70's resting over the next hour or so . For the first 20 months when I got AF I went for a run to get rid of it! Unfortunately that happy state of affairs stopped in July this year when the run trick stopped working., I was then 130 - 180 resting (on and off) for seven days before an intravenous flecainide infusion dropped it back to normal sinus. Now I take 2 x 50mg flecainide tabs a day a day for rhythm control , and a 200mg Diltiazem for rate control. Now I struggle to get my HR above 135 when exercising and it is not at all enjoyable. I am a minute and a half a mile slower running.

Do you take meds if so which, and do they affect your excercise capacity?

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Most cardio work will kick off AF. A Bruce protocol treadmill test showed that my heart alternated between atrial fibrillation and atrial flutter. Medical text books say that AF decreases power output by 30%, but using a CycleOps SuperMagneto Pro turbo trainer showed that my output only decreased by 8% to 10%. As my bike was stolen out of the garden and the stroke left me partially sighted, I now use a Concept2 rowing machine for 2km to 5km (I used to row 12.5km). My 500 metre splits are around 2:10 and I make sure that my heart rate doesn't go above 180.

I can't take betablockers as my heart rate drops to around 25 with pauses when I'm asleep. Dronedarone and amiodarone literaly left me close to death, so I don't take any rate control medication. I was recommended not to take an anticoagulant, but I had a full stroke and now take Pradaxa and amlopidine. As far as I'm aware, neither affect my exercise. My Consultant Neurologist is happy for me to use a static bike or the rowing machine, presumably as this would increase the blood flow to my brain.

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Have you tried Attenolol 25Mg to control thimgs I find this beta blocker suits me with not the problems IHad with others medications.

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My problem is that my heart rate whilst sleeping is around 25 bpm with pauses up to 2 seconds. Slowing the heart rate further could end up in another occasion when I argue not to be placed in the ICU.

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I have slow AF and the only time I am aware of symptoms is when trying to exercise I get exhausted very quickly, and my HR may be higher than normal. I also tend to urinate a lot more than usual during the first 12 hours of an episode for some unknown reason! I used to confuse panic attacks with AF, but I have them both worked out now, and they are quite different.

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see my comment above re peeing.

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How long does your episodes last?

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Lasts as long as it takes me to get on my bike and terminate it. My first episode was 3 weeks as I hadn't discovered the fix at that point. My shortest is 24 hours. I'm back in AF today and went for a 5 minute cycle but still in AF. Need to do a longer ride tomorrow!

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Thank's

Keith.

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Hi. I have PAF and don't take any medication apart from Apixaban. When I have an episode, my heart rate is usually between 140 and 160 with 180 being the highest I have recorded. I feel very breathless but so far, the longest it has lasted is 2 minutes. I feel a bit wiped out when it stops. Other times, I just get what feels like a missed beat and a thump.

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Oh yes, I have had the thump. Weird feeling

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Hi Susan :-) my P-AF like yours is 'under control' with medication at the moment in other words I am no longer experiencing the horrible symptoms which suddenly started to develop with alarming frequency after years of infrequent episodes....

They were ...

Pulse 'chaotic' no rhythm 155+ bpm, heartbeat fast/chaotic and pronounced, breathless, shaking, cold sweats, dizzy, feel faint odd sensation of being grabbed in the throat, blood pressure soaring to 210/110 then dropping within minutes to 119/80 which I think may be the main reason for my symptoms and feeling so ill. I was like my body was going into shock.

Now I occasionally feel the odd sensation in my throat and a bit breathless but having asthma the latter could be attributed to that. At these times a quick check of my pulse and the irregular beat (or an ectopic beat) is there but no longer rapid. I can also pick up that there is an irregularity in the heart beat on my BP monitor .

I know this period of calm may not last, AF is progressive and the old AF could break through at any time. For now I am doing all I can to prevent that progression by losing weigh/more exercise/not letting myself become stressed. The beta blockers have brought down my blood pressure to a more acceptable level and this too may be helping to keep my symptoms in check .

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The first and second episodes I had were by far the worst. The first time I had chest pain which I thought was bad indigestion. The second time I awoke and couldn't work out whether I had hurt my back or my chest. I felt really ill and was pale and clammy, but strangely enough didn't notice my heart racing, but it actually squelched as my daughter was driving me to the doctor. When I saw him I was still in AF but didn't feel as bad as when I first woke up.

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Hi Susan...if you feel for your pulse at your wrist you will be aware of the irregular beats.I liken it to Morse code .

I'm in no doubt at all when I go intoAF....usually preceded by a brief feeling of impending doom and then a rapid escalation of a crazy heart rate..anything up to 240+ bpm..Last time 6 months ago it started as this and then settled at more respectable 140/150. Unfortunately my episodes do not usually abate without intervention in the form of dc cardioversion.

Sandra

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Sandra,

This sounds exactly like me. Had to have 4 cardioversions in 5 months and had 4th ablation with extensive work (some patching to old areas) & some new work 2 weeks ago. Still feeling exhausted and still having that feeling that something could go boom but hopefully all will be ok this time

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yoyo_again ..i do hope your 4th ablation makes a difference. You've been through alot. ( I'm on the list for no 4 should it be necessary...hope not ). Has pace/ ablate been mentioned?

Sandra

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Hi Sandra

At 58yrs old they are holding off and said there was a little more tweaking if needed but if all fails they said a pacemaker and junction box (need to find out what that means). My holiday insurance for a 6 night cruise with daughter will be expensive because of "unplanned admissions" but hope to avoid those if this ablation works and enjoy some nice holidays in the future.

.

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yoyo_again ..yes it is these unplanned admissions which hike the insurance. I cancelled our Caribbean Xmas cruise after further 2 admissions was pushing insurance towards 2k.

The junction box is actually the AV node so possibly were referring to AV node ablation.

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That is such a shame Sandra, a Christmas Caribbean cruise would have been fab. I got travel insurance in May for an Aug cruise and paid £70 for 2 weeks cruise insurance as I had 1 unplanned admission in previous 12 month. I then had 2 more unplanned admissions and was "awaiting further treatment" so had to pay an extra £200 for the 2 weeks cover.

As said I have a 6 night cruise with daughter as a treat because I have left work and for the first time can go on hol in termtime (although husband still restricted so he can't come) I need to look at the price of insurance but can't bear to just yet!!

Thanks for advice on AV node

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The ones I know about cause a spike in my HR, like I would feel had I ran for the bus "back in the day" only not settling.... and exertion causes light headedness, and sometimes shortness of breath/crushing sensation on the chest like I've just eaten a massive meal and I'm feeling very "full"

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These replies are very informative and Thank you all for taking the time to reply, from your replies I realise now after thinking about what my consultant said that my heart rate is under control but my rhythm is not and never will be, several medical people have said I have a very regular, irregular heartbeat .

From time to time when walking I can be more out of breath, but I really wonder if I do get episodes like some people have described, some of them sound most unpleasant and some frightening. I am sure I am lucky 🍀 in that digoxin does not work for everyone. I have been on it for about nearly 4 years now and know a pacemaker is the next step.

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If it is a regular irregular beat then it may well be ectopics father than full blown AF. Bi-geminy and tri -geminy can also move into a more complex arrangement where alternate beats an an ascending scale occur. I had them for a while missing every second, third , fourth etc up to eleven and back to second but this was not AF.

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Not sure what a bi geminy and yri geminy is but ectopics have never been mentioned just paf, I will ask the consultant next time though

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I have permanent flutter now after 3 ablations..have had heart rate slowed with medication...still uncomfortable at times. Starting on an antidepressant. EP says no more ablations..only a 30 percent rate of working.

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According to Affirm Report, controlling your heart rate is more important than heart rhythm.

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My episodes happen every 8 days, they were due on Saturday but they did not start until last night and last about 2 days. I don't know what my heart rate is because I can't count my pulse it is all over the place missing and going fast and slow etc. I don't think anything triggers it, it just seems to happen on its own. I don't feel any different because I feel terrible all the time, ever since I had a TIA and this AF in feb just over 8 month ago.

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That sounds awful

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I feel as if my heart is jogging up a mountain without the rest of my body. By the time it has done a 12 hour marathon it's all a bit tiring. I used to have pauses afterwards but now a pacemaker stops that part.

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So a pacemaker improved things?

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It has, in as much as I was able to get my driving license back (which with living rurally and having young children was a nightmare) and I don't feel so spaced out without long pauses. I don't feel amazing like I have heard some people do but it definitely serves a purpose.

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I was sometimes alerted to the start of an episode by a few ectopics which make me conscious of my HB. How I felt depends on how fast my HB was and what I tried to do. I have sometimes had chest pain, usually had the frequent peeing, and have had an upset stomach and nausea. Certainly felt a bit weak and faint. The main test is your pulse. If there is no recognisable rhythm it is AF, if there is some kind of rhythm it isn't!

There is a hilarious demonstration of various arrhythmias on YouTube where scientists do an Arrhythmia Dance. Do watch it!

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Do you have to have palpitations to be in Afib?

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AF for me caused a very fast, chaotic HB and the feeling of being unable to get air into my lungs. My normally low BP plummeted even lower, leaving me gasping for air. Episodes were accompanied by the dreadful peeing of gallons every 20 minutes, gurgling, bloating and diarrhea (sorry - I was the dinner guest from hell).

Severe ectopics - every other beat (bigeminy) and every 3rd beat (trigeminy) can be very debilitating too but may have a lower heart rate than AF and feel less chaotic.

I find it easier to take my pulse at the carotid artery in the dip of the throat either side, just below the jaw. Ectopics can be felt as an apparent missed or late beat with a certain degree of rhythm and pauses about them. AF is just generally beats all over the place fast, slow, pauses - the lot.

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I dont understand the amount of peeing and diarrhoea? Why do our bodies react like that? , your symptoms sound awful

Thanks re carotid artery, I will try that.

I have one of those finger pulse machines, it seems to work ok I think.

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The peeing is caused by an enzyme which I think is called ANP and gets released by the stretching of the atria. Its job is to rid the body of salt. Many of us have gut disturbances with AF as the heart and gut are closely linked. The symptoms were awful but, since starting Flecainide over 3 years ago, I've been AF free.

The finger pulse monitor gets confused by AF as it cannot determine what is and is not a beat, so readings might be incorrect but otherwise, I like mine too.

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My PAF episodes were never short, maximum was all day and all night and this in turn caused me to have a stroke. I have to agree that it could have been stress related although I thought I was coping very well, I didn't feel stress but was constantly flying high at work achieving projects and so on but my heart new different, there were several symptoms, mine used to start in the evening mainly when I was at rest and of course into the night, couldn't sleeping constant peeing leaving me exhausted at times. I found if I could regulate my breathing pattern to that of my husbands sleeping peacefully beside me I could eventually get off to sleep and in the morning the AF had finished leaving me in sinus. After the stroke I was retired on the grounds of ill health, took me time to recover fully (if I ever did) and the PAF was always there in the background even though supposedly drug controlled. After a few years it got worse and prolonged and eventually I was sent for catheter ablation which was a disaster for me and caused dangerously low heart rate so consultant recommended a Pacemaker and for 3 years now I have had peace from the wretched condition, I still take anti coag/heart drugs/statins but the symptoms now controlled and I am hoping remain so.

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Thank you for that tip re regulating breathing and I hope the pacemaker continues to let you live a tolerable life without the suffering in the past.

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From memory.

Why do I feel out of breath but, I have not moved from this chair? Why do I need to go for a leak every 15 minutes?

Checked pulse, unable to count it was so fast and irregular. Almost like there is an echo beat in the background.

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I get the thump and it feels a little like my heart turned over. Then it goes off at speed for a minute or two. I give a couple of strong cough outs and that usually knocks it back to normal rhythm. If Im in a stressful situation my heart can slip into palpitations without my knowing. Its harder to cough it back into nsr on those occasions.

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When I had Paroxysmal AF, the episodes, when untreated lasted up to 19 hours. When diagnosed and treated they'd usually knowlingly lasted until I could get to bed and go fast asleep. That was the time it takes to get to bed and fall asleep. If I was at home 15 minutes; if in a neighbouring town an hour or more.

I now have asymptomatic persistant (for all intents and purposes permanent) AF. My resting heart rate today at the doctors was about 80. I was at the doctors for a check-up and 'flu jab. My BP was 120/72 which I was pleased with.

I have periods of intense tiredness, and also have asthma, plus lymphoedema in both lower legs, yet most of the time I'm active. Eleven months ago I managed to get myself off daily steroids as tratment for polymyalgia which lasted for 3 years and 7 months.

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I have a lymph drainage massage every month and that has helped my swollen ankles alot, I would definitely recommend that, its a particular sort of massage and not many do it, but it clears your lymph system.

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An AF episode for me, at it's worst is powerful chest thumping palpitations that scare the life out of me. At the other end of the spectrum, I can simply feel that my heart is out of sync / irregular and this coincides with me feeling poorly and tired, until it gets back in rhythm. Since diagnosis 2 years ago when I started taking flecanide, I have not had the chest thumping palpitations, but the 'triggers' can sometimes put me into the 'out of sync' episodes. Triggers can include, alcohol, spicy foods, lack of sleep or more often or not, a mixture of all three. I have however this year become a triathlete and I find that rigorous exercise and training helps my symptoms no end, plus all the other mental benefits that come with physical exercise.

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A few people have mentioned exercise, to be honest I am too scared to do any vigorous exercise. Just stick to walking, pilates and swimming at the moment.

I have to say that I cannot feel or notice the uneven rythm at all, but as mine is uneven all the time maybe I am just accustomed to it?

I actually thought I was reasonably bley aware of my body and symptoms but hearing about the episodes on here and the level of awareness I think I am not as finely tuned to myself as I thought. Blissful ignorance springs to mind!

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The exercise you say you do might not be 'vigorous' but it's a good mix you do fairplay. I was scared too at first and gradually built myself up. I've heard a lot of people saying that they are symptomless which does surprise me personally but we are all different aren't we. I agree about being blissfully aware too!! ☺

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If a person is symptomless, how does the doctor diagnose his Afib?

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One of my triggers is constipation,the food backs up and pushes my diaphragm up. I keep telling the medical profession but no one seems to liste,I also pee more than normal

I am exhausted after a paf episode

An interesting read. Roemheld Syndrome

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You are spot on and I am exactly the same. Most cardio docs are years behind Roemheld. My problems are primarily waking at night with atrial tachycardia but occadionally AF. I can usually terminate AF and always terminate focal atrial tachycardia episodes by moving gas/waste through my bowel in the transverse colon area where I suspect the nerve is more sensitive (deep breathing to massage the vagus nerve helps too) so the connection between bowel, vagus and heart is undoubted in my case. I've got a treatment regimen that I've devised over many years that limits the duration, intensity and frequency of attacks but it's still a struggle when sleep is disturbed regularly. Beware getting a cold or virus too as the combination of inflammation and Roemheld syndrome sends my heart issues wild. Unfortunately there appears to be little progress being made on this perspective so it seems we are on our own for now though.

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Its a little expensive around 90 GBP but the Kardia alivecor.com/?gclid=EAIaIQo... device is a small pad that works with your smart phone and actually does an ECG. I was recommended by a rhythm specialist to try it out. This was how I was finally diagnosed with AF as I was never able to get to the hospital to get a reading when I had a racing heart. I am now using the system to tack the events which can then be emailed to your GP or specialist. What I have found that initially I can pick up the event myself however the duration is much longer that I thought.

Triggers, Stress, Heavy Exercise, and Alcohol are some but sometimes there is no direct trigger ?

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I have rare episodes now at times and dont feel quite right. So check my heart with an app on my iPhone called Heart Rate Free. Which gives you heart BPM and rhythm. I just take 25mg of Attenolol to steady it down and rest or sleep for a while which is possible when you are retired as I am now 76.

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