AF episode - when to go to emergency room and when to sit it out at home?

Hi Trish

Thank you for the recommendation of a heart monitor to check pulse that sounds a very good idea I shall look into that

I am glad your AF has stabilised long may it continue !

Hi Okapis

Thank you for sharing your experiences sounds like you've been through the mill with it!

The wrist monitor sounds like a very good idea I shall invest in one 👍 Then I will know when I need to get to A&E which I really hope doesn't happen anytime again soon

Yes I am on warfarin already 😄

I wish it was that simple frank .the first time I went doctors   And it was him that sent me to  a& e  in an ambulance as my heart rate was 177  it took nurses and doctors  8 hours before they could bring it down, the next time I went by car  as heart rate was 164.   The time after that I collapsed  so paramedics came and they called for ambulance. As for food. I kept a diary   To see what triggers but    Couldn't pinpoint anything ,so it may be ok for you  but not others   

Trish I can empathise, it is t that easy! I have had 4 episodes in 3 years, and no triggers can be found, food or otherwise. Mine had been fluctuating between 77 and 230 at its worse, but meds have always got me back on track wishing 36 hours. I don't take anything for my Parox.afib, just carry a pill in the pocket, bisoprolol,  around with me. It isn't an easy call when to go to hospital, I usually wait a couple of hours x

Finding food triggers is VERY difficult, and boring as can be - that is why you'll never find a doctor work with you on that. And it could take a year to nail the triggers down, with perhaps several intervening episodes...and even then it could be certain false alarms due to the interactions of mixes that act as triggers, not a food alone. For me, I thought a trigger was pickled jalopenia peppers in a chicken quesedia when it turned out to be the high dose of wheat from the 3 Irish beers and tortia.  No more wheat, and no more afib for me, but the alcohol was probably an active by-stander.

I suggested something in the diet as a trigger because those seem to show up with 3 AM episodes, when one is lying down and when vagus nerve and stomach issues erupt higher up.

Still, I think its a good first try for late night incidences.

Frank

Hi Frank

Yes I am trying to figure that one out! I am on medication for digestive issues and have read on here a connection so will monitor closely to see what foods may affect the AF would be wonderful to find the triggers 😊

Getting annoyed with this website when I enter text and it tells me I must add some content and then what I've typed gets wiped. Grrrr

Anyway have posted this before but might help to do it again. I take 2.5mg Bisoprolol a day. When I took it at 9am I would get an episode at about the following 3am. I started taking it at about 6pm (as others have suggested) and I haven't had an episode since (touch wood).

Hi Andrew, i use alivcor - kardia to help monitor and record episodes. I am lucky i still have the pill in the pocket of flecanide to cope and that seem to work. I have the side issue of spasm angina (prinzmetal - large and small vessels -- and ME) I find the Alivcor is great it enables better monitoring of both (but mainly arrhtythmia) and better medicating. For me it comes on if  i am more relaxed (as do the spasms and they last longer) had a busy day and then really relax in the evneing. or prolonged stress....  

God only knows how you manage to cope and stay happy with A-FIB, Spasm Angina AND ME Andrew. My respect goes out to you!!.

yep i'm the same, have a busy stressful (but good type stress) day at workj then after around 4 hours of being home and relaxing it starts.

Thank you, i just am grateful each morning i wake up!... Yeah i thrived on "good stress" a bit of an achiever, athlete too... and then wumph.. life changed. I really do recomend Alivcor - go to their website to get it Amazon is expensive... you can see how bad or good it is take any medication... also it is NHS approved, but you will need to get base lines to refer from. Also do a lot of research, going to your cardilogist with some reading material is always good. Mine is very understanding listens and explains....  for me i find most of my attacks come from being happy and relaxed and the early hours 2 till 4 .... so also disrupted sleep which is annoying - esp as i have to rest to try and aid ME recovery... bit of a catch 22 .... need to be active ot keep the heart happy need to rest for the ME to recover.. hmmm.... ah well.... Be positve and keep doing as much as you can.. oh one thing i have found.. on a building site nearby where i used ot work they were using a road compactor this set off my arrythmia.. the site manager was good and they tried to use it when i wasnt there i.e. before 8 and after 6... (lucky it was spring / summer) but one of the attacks i thought i was finished, blue hands face fainting sick.... phew... Flecanide and loads of GTN... so, be aware of a regular large vibration like a hammer drill, road compactor etc... could have an impact - as could rock music at a concert...  Anyway now after two years have got to being able ot d oan hours activity and hours at a compuetr reading etc and an hour proper rest... not sure how much more i can do but.. also and really chuffed wit hthsi back to regular coaching twice a week and have a lovely group of athletes... who are also very understanding and supportive (one has even gone and got Cardioversion trained so they can use the leisure centre heart kit...    

Thanks for the tip Marco!!!

Hi Andrew,

​i totally get whatt you mean about random triggers, mine can be riding my motorbike, playing a computer game etc, its so frustrating, it like an enjoyment killer.

Its mostly worse for me when i try to sleep, and im fed up with trying to second guess the triggers too,tried all kinds of remedies.

​Have been on flecainide, but it seems after a few months to have broken through that as well, its evil.

​im off to see the specialist in March again too, so i will have a word, but it usually falls on deaf ears, i think he thinks because i swim 40 lengths most days with no ill effects im ok, ? but the experts dont seem to understand have this cann affect your life mentally.

Anyway all the best.

wow Andrew, you certainly do have a good group of colleagues/athletes there!! As for the road workers , I think if I asked one of the road workers to do that here in Dumfries they would laugh at me and I work for the council so they know me!!. I feel very humbled hearing how you suffer from those afflictions yet still lead a full life and in fact actively seek to do more like you're athletics!!. I'm 38 and yes I work 45 hours a week but have to admit I have been scared to indulge in my passion of mountain biking since the A-FIB began in December 2016. Can I ask how old you are if you don't mind me asking? Any tips for getting back into mountain biking safely? I take it you don't recommend I go out alone in the forrests anymore?.

I am 55 and now ill health retired... my athletes get me an hour at a time - twice a week, i cant do the cold section when we go shopping (and that is frutrating! heart just cramps... ) i also worked for a council (Cornwall) i was liucky with the neighbouring building site... verylucky but i think their view was strentghtened afterr the bad incident. However, my view is as from my competitve days, go try.... so each day i challenge all i can and all i do unless i am feeling rubbish in which case its rest and recovery. (sometimes can be a week long) Getting back to activity... hmmm what i would do is, using the alivcor monitor my activity when i go out with friends  / partner plan my routes and make sure there are no dead phone spots. i  / we do this even when we are going out for a walk. We also make sure we know the good collection points, map reading is a fun skill. i would not recomend going alone till you are comfortable with being active wit hsomeone. to be alone i would suggest you do need alivcor (no i dont work for them) a medicine pack including 300mg soluble asprin, 500ml water and of course any medications prescribed. the water is in addition to the normal water pack. carry a whislte and torch. and tell someone your expectations and phone them if your plans change. Sounds a lot but you quickly get used ot it and the nyou can relax and enjoy. Also being safe you know what will happen if things go wrong also a great comfort takes ten mins to have a medical pack... 1/2 hour to plan known routes.... and fun cos you become free again. Dont forget though your heart isnt as good as it was but you can work it but... be sensible so if you used to go for a 20 mile cycle start at 4 miles and slowly build up , always make sure you can have planned rest days ... do some weights - but check here with your cardiologist about what weight training you can do - the upper heart can get strained and weights would not be recomended. Also dont use swiming as a rest or soothing replacement exercise water exerts pressure which can change heart work and set it off (from experience.. but then cold does too... ooops) personally i would go for it....jolting trails.. take them more slowly and build up tolerance. dont look at what you cant do, look at what you can do with a bit of planing thought and a smidge of patience. Remember do what you can and dont try tooooooo much.... but exercise will help the heart. Also whilst afib is dangerous will lead to other things if you leave it too long, the point is you do have time.... if you crash use the whistle do the emergancy call 999 or 112... and register your phone with emergency services look it up worth doing and gives even more security. and then... enjoy... carefully i am happy to provide an email address if you want to keep in touch... i go for walks alone, but always have fully charged phone and a whistle...      

Thanks so much for all that great and informative advice Andrew!. I have checked out the alivcor and even my go recommended it when he found out it would be a 3 month wait to get my 72hr monitor referral picked up. Am I right in thinking when you send the alivcor data off it goes to a company call centre somewhere with trained medical personnel interpreting the data and replying with recommendations on what where and who to see next?. It's about £70 to buy basic price, do you then pay a monthly subscription fee as well?. My go recommends all the latest tech because within a month of being diagnosed with a fib I had bought my pulse odometer and digital blood pressure monitor and was giving him true data to help his recommendations and medication choice etc. He is the same age as me which I think helps too.

DAMN PREDICTIVE TEXT!!!

i meant - pulse oximeter and go - GP

it does seem to "learn" how to overcome the medication doesn't it Bob then slowly worm its way through , spouse it's like bugs becoming immune to antibiotics 

i have taught myself to read the charts saves a few pennies, i use the base unit with my phone and read the charts... always have it in a waterproof bag!! yup i use ox imeter and blood pressure too. try and give yourself clean times without drugs - easier when monitoring it delays the body adapting and slows down the rate of climbing up the dosages rates, keep in touch would be really good to hear you begining to escape into the wilds again!!! 

Will do thanks Andrew!.

Hi Andrew

Yes I totally agree nighttime episodes are so much worse ! My first ever one started at 3am, the second at 10pm and the third at midnight 😒 I live on my own which makes it more stressful I think ,

I now take my medication in the evening and my last 2 recent episodes started early afternoon once when I was washing my car strangely !

Like you I feel I cope much better during the day and feel I can call upon friends and family if needed rather than wake them in the middle of the night ??

Andrew, a cardiologist once confirmed to me that going to sleep is a pretty good way of stopping an episode. Gave me a technical reason (he was an academic doc) that I have not retained. But for a long time putting myslef to bed and sleeping did the trick more often than not until the AF became too severe

Interesting about the day/night thing. I only ever get episodes late at night. If I make sure I don't get over tired, avoid stimulants in the evening and make sure I get to bet at a reasonable hour + feel relaxed (no stress!) - for which I meditate and practice a gentle form of yoga which calms the nervous system - then, since I began this regime, I haven't had an episode. For me, definitely linked to body's natural circadian cycle - if my nervous system is rested and on natural full speed ahead, all is fine, but come the evening when the body is naturally slowing and preparing for rest mode, then very important to go with that and not tax the system by eating large amounts of sugar/stimulant rich food and staying up late. Seems to work for me at the moment, but appreciate it's different for everyone. All the best.

Additionally, with a group of Arrhythmias the problem seems to stem form heart demand dropping. This group of previously fit / keen athletic types as the ydrop out of the "sport" typically after 20ish years they then develop arrhthymias... My GP and prof pearsons work at Liverpool uni suggets there is a link between being very fit for a long period oftime and demand drop led Arrhythmias... so like me as you get more relaxed and comforatble the more likley you are to have an epsisode, for this group taking medication and going for a brsik walk is more likley to help i have found a number of times tking flecanide and going for a quick walk has stopped the episode. ... this does conflict with the ME at times but for me heart has a higher importance than the ME...

 

Hi Andrew 22534,

Thanks for your frank and interesting posts.

I am wondering if you or anyone else for that matter can help me because having done minimal research and having read a number of posts on the AF and Flutter forum I have become quite confused. Let me explain; a number of folks report “episodes” lasting many hours and even days, they report using drugs that I have not heard of, they discuss when it is wise to rush off to A&E and none of this relates directly to what I am experiencing. However is it just a matter of degree? Let me define where I am at.

I was diagnosed with AF about 2 years ago by my GP who prescribed me diltiazem to “slow down my heart”. He sent me to a consultant cardiologist who did ECGs, x-rays etc. and put me on a 24 hour ambulatory ECG, confirmed the diagnosis and doubled the dose of diltiazem. I was already on warfarin with a therapeutic INR range of 2.5 – 3.5, so that side of things was covered.

The diagnosis came about because I was becoming more breathless. I already had issues with my cardio/vascular system anyway (bits hacked off my lungs due to cancer treatment, half a diaphragm and a prosthetic heart valve) so it took me a while for me to go to the GP since I was kind of used to being breathless on occasion. I had also had an ectopic heartbeat for many years. Occasionally (sometimes years apart) I would get a very fast heartbeat and my heart would pound and leap about in my chest like a car engine does when a cylinder misfires – this was disturbing my partner at night since it could make the bed shake. It wouldn’t last very long though, maybe 20 minutes to an hour.

At this time my heart beat is irregular all the time, there are never more than 10 or 12 consecutive beats before a delayed beat and the consultant tells me that during the latest 24 hour ECG I was permanently in AF.

Thinking back, although I have had ectopic heartbeats for many years, I believe the first time I experienced AF was during recovery from the cancer treatment where my heartbeat went up to 220. I had a major operation to remove a huge tumour from between my lungs (not lung cancer but primitive germ cell cancer) which involved excising parts of my lungs and losing the phrenic nerve to the right hand side of my diaphragm. It also meant that they moved my heart to a slightly different position and had to remove the pericardium.

So my heart is now closer to my rib cage and I believe can kind of stick to things it shouldn’t. During recovery I had an AF episode, although they didn’t call it that or give it any name actually but I know now that is what it was, and I was told that with thoracic surgery it was quite common since they often pushed the heart around and the “theory” was that the nerves controlling the heart were in some way distressed by the mechanical handing. This might tie in with what one of you guys was saying about episodes being brought on by heavy vibrations, so it makes some sense.

Now what alarms me is that you guys are reporting what seem to me to be major incidents and go around armed with back-up medication and have contingency for medical evac to A&E. I on the other hand rarely get what might be described as an “episode”, my arrhythmia does not seem to trouble me that mush and I just carry on regardless.

So am I in some kind of denial here? Is this just a foretaste of things to come? What should I do, if anything, to minimise the chances of my condition worsening? I’m sorry if this sounds trivial to you but maybe I’m in the wrong forum?

Thanks for reading thus far and good luck and good health to all you folk with AF.

Regards,

Phil.

Hi Phil, that's an interesting read... heck... well you are right you are in a different place form most of us on this thread so far.... but... semi constant arrhythmia is also not to be taken lightly... people can and do live with it and live a very long time... equally it is a threat hanging over you.... Are you in denial? no i dont think so you wouldnt be with us on here... is it trivial? no most definitely not.... i would be very inclined to discuss with your health team what you can do exercise wise... again very pragmatically do the horrid google thing and see the other stories, yes you will see some horror stroies yes you will see some miracles... but armed wit hthat range of knowledge approach you health team and say.. i ahve read this and want to know what can i do... for me it is always better to go what can i do not what shouldnt or cant i do.... Do not be scared and try not to be upset.... but take the information as that and use it. use it to push others into doing better for you. and dont be afraid to say if not why not.... The medical teams today are time challanged they do not have time to do all the reading all the research you have much more time available use it and the nwork out your questions. My cardiologist and ME consultants say that all patients should be come experts in their conditions NICE even suggests the same... each person is unique each illness affects them just slightly differently, so ... be your expert and get your wife to do the same research and then the two of you discuss... my wife and i found this to be very efective and a good research tool Get  a folder set up and then use that folder to go on with...... does this help and set you up at a starting point?

Hi Andrew22534,

Thanks for that and your supportive comments and yes, it does help.

I have certainly come to realise that I need to learn more about AF and I think it is true that we are and should be the experts in our own health/body and I need to do some serious research. Your point about involving one's partner is a very good idea also.

Gaining the necessary increase in knowledge I am comfortable with and quite skilled at but as for practical steps to take, well, I know I need to get a lot fitter (after years of a 5.5 hour daily commute I've kind of let myself become too sedentary!), although I'm not that over weight, just unfit, and I'm sure that would improve my mental attitude and physical condition. At the moment though I am somewhat limited since I have an abdominal incisional hernia (after life saving surgery to resolve small intestine volvulus) so I'm on the lengthen NHS waiting list. I just need to make sure my partner doesn't see me lifting anything "too heavy", like getting the bike out of the garage or lifting the shopping! It's easy to find excuses, I just need to get on with it.

Thanks once again for your interest.

Regards,

Phil.

You hit it on the head bassbob54 ..mental  it's bad enough that we have to deal with the all over the place beats short of breath dizziness but the mental part to me is the worst laying there with all these thoughts going through my head I wish the doctors could just understand that part of it amongst others that would be half the battle  for me anyway. I am not on blood dinners I'm only on Alton and all which keeps the rate down my worst fear is a stroke. I have two girlfriends and a mother-in-law who all had a stroke and I do not want to be in that position good luck on your doctors visit and I hope it does not fall on deaf ears. This site is wonderful because you can vent and that helps so much when the people you're venting to have the same issue good luck to you and God bless