Hi guys, I had an episode of AF two and a half years ago and then nothing until New Year’s Day . Been handling a very stressful situation with some property developers and reacted by completely overdosing on chocolate for seven days . Then had Chinese meal New Year’s Eve . Then went to speed walk with dog in the morning and went into AF about half a mile from home . Husband s phone is usually on silent so he didn’t pick up. Wobbled back home Kardia said AF 175 bpm . Now. I don’t know when /if it will happen again and could do with some practical advice . Not rate controlled so it’s fast and you don’t feel great . So I was able to walk home but what do you do if you are further from home on foot? Am not sure taxis take large dogs. If you are alone in your car a good distance from home . Even if you pull in some where I don’t feel like wobbling in but the problem with just sitting in your car is increased need to pee. Worried you might pass out in toilet cubicle . What if travelling down the motorway alone between north west and Southampton . What do you do? How do you cope ? When it happens and you are alone away from home . Both episodes lasted about 24 hours each so it’s not a brief flurry .
I have read the Afib Cure by Dr John Day so know what to eat and what not to
Help much appreciated with these practical problems
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Peony4575
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Good question. Initially, when my episodes were years apart, I had no plan and usually ended up in the A&E for cardioversion.
Later, I carried a rate control drug with me (diltiazem) that brought my heart rate down until I converted. You really don't want to have a high heart rate any longer than necessary. Other popular rate control drug is bisoprolol or metoprolol.
When my episodes became more frequent, I carried both a rate control drug with me as well as an anti-arrythmic drug, Flecainide. It was the pill in pocket (PIP) approach to convert to normal rhythm, usually within an hour or so.
That said, these drugs may not work immediately. Most of my episodes have happened at home, but occasionally outside or on the road. When outside, I find a place to sit down and then take my drugs. Then, if close to home, figure the easiest way to get back, be it walking, an uber, or calling a friend for a ride.
When on the road, I take the first exit off and find a place to sit and then decide whether to wait it out or call for help. Fortunately, never had to do the latter.
A lot has to do with how you function in afib. Some people can just keep on going, others can barely function. Most in-between.
In addition to the drugs, I make it a point to always carry a cell phone with me now and make sure it's charged. I also carry a Kardia ekg device as well.
many thanks Jim that is very helpful much appreciated . Not much chance of getting an ambulance in UK at the moment . I have been given flecainide 50mg as pip but will be a bit apprehensive taking that for the first time . I had thought you had to be on a cardiac monitor the first time you took it but apparently not . Bisoprolol didn’t bring the rate down much . Yes I carry cell phone and Kardia . Apart from the first whoosh of adrenalin making me feel wobbly when I realise what is happening am able to walk etc although don’t feel the best
Thank you . Not a risk am willing to take currently . Though an awful lot of chocolate was involved , I have been ok with normal amounts previously . I think I would find it easier to just give it up altogether . Prior to this incident I would go weeks without eating any chocolate . The excessive chomping was a response to stress
My sure fire trigger is mincemeat ( the mince pie sort). I don't like mince pies but I used to make an apple and mincemeat frangipani at Christmas. This year I used up the last of the jar in mince pies for my husband. Won't be buying another jar!
I do avoid Chinese food as well and coffee . I stopped eating in Chinese restaurants as I suspect they buy their supplies in the big Chinese supermarkets ( when we lived in Brum we used to go to one on an industrial estate and you would see people with huge amounts of stuff). A lot of this is imported from China and they use FQ antibiotics in livestock rearing . I try to only eat organic meat or fish raised without antibiotics if farmed. I eat 2/3 squares of dark chocolate a day with no ill effect. I never eat more than that even at Christmas.
They talk about monitoring the first time you take flecainide in a medical setting, but haven't run across anyone that has been asked to do it. What I was required to do was to do a stress test to make sure my heart was structurally sound. I took my first (and subsequent) PIP doses of flecainide at home because it just turned out that way. I would also be reluctant to try my first PIP of Flecainide out and about.
What worked with me for rate control during an episode was 60-120mg of diltiazem. Followed by more in a couple of hours if needed. It generally got my resting heart rate down to under 100 in 4-8 hours. Then I'd add a little metoprolol (like bisoprolol) to keep my HR down when I moved about and waiting to convert to normal rhythm. Needless to say, this is not a recommendation -- that must come from your doctor -- but just something that has worked for me and others to control heart rate when in afib.
That was before I started using flecainide as PIP. Now I just pop 50mg flec with 30mg of diltiazem and repeat in another hour if still in afib. Most people use higher doses, but 50mg does the trick for me.
As for Chinese food, just ask them to steam everything and put the sauce on the side. Give the sauce to someone else at the table because chances are it also will have msg in it!
Jim I think it would be a while before I worked up the courage to try Chinese food again ! Thank you for the details of what you use , I really cannot tolerate beta blockers so would rather try a calcium channel blocker if needs must. They monitored my heart for many hours at 175bpm on the cardiac ward I was an in patient for 24 hours and they seemed happy it stood up well and I have an echo on Saturday . The cardiologist on duty that day luckily was the EP and I have a follow up appointment in March
FWIW I don't tolerate beta blockers well either, so that's why I primarily use diltiazem (a calcium channel blocker) for rate control. However, what I found is that while diltiazem lowered my heart rate while in bed, just a little bit of metoprolol tartrate (12.5mg) was enough to keep the HR down when moving around. Ironically, the metoprolol didn't bother me that much while on diltiazem which apparently muted to some degree my adverse action to metoprolol alone.
Not a doctor, but I don't like that they left your HR for many hours at 175 at the cardiac ward. When I used to go to the A&E, the first thing they did was get the rate under control.
Good luck with your appointment next month and hopefully you won't have any new episodes to report.
Thanks Jim. Because they were so busy in a&e I was diverted to the acute medical unit and they didn’t really know what they were doing . I did have 5mg bisoprolol which brought it down briefly to 130 then it shot back up. The cardiology regs plan was to leave me until the next day and then cardio vert me ( don’t get sick on New Year’s Day ). Fortunately I went back into NSR off my own bat, at which point the EP arrived to discharge me with prescription for pip flecainide, and Edoxaban . The other time I had it I did go via a&e and they gave me bisoprolol and amiodarone which seemed more effective . Yes thanks! Be lovely if no more episodes to report !
If it sounds good to you -- since we are both adverse to beta blockers -- use my protocol as a template to discuss with your doctor, if they don't come up with something that meets your needs. They often just meet their own needs and send you out the door unless you persist. Sorry about the cynicism lol
I share your cynicism. She proposed I went out on beta blockers and given I couldn’t tolerate beta blockers last time and endured a horrendous withdrawal I politely declined . I said given the only other episode was two and a half years ago I wasn’t taking horrible drugs everyday until there was evidence that it was happening frequently. She said fair point . They have a one size fits all protocol driven mentality and I agree you have to speak up for yourself. I will do that thanks Jim, save her the trouble of thinking outside of the box 😊
When I had episodes years apart, I was on daily nothing. I only started daily meds, when my afib was happening every few weeks. Probably could have started a little earlier.
It sounds like you had a perfect storm so many things triggering off at once. The chinese meal would be my guess especially having had a stressful time. I had to give up Chinese food and I love it so miss it badly.
After my first afib episode which took me to hospital I was clueless what it was and managed to drive home from the next town but kept nearly passing out. I worked full time and was on the road lots. Once diagnosed and medicated with beta blocker I went back to work after a week off and continued driving miles all around the country.
Two years later SVT struck and made the afib look like a walk in the park. Had just got to holiday destination and went to bed to be woken with mad heart rate of 200+ beats per minute. Off to local hospital and had to cancel cruise due the next day. Felt dreadful for several weeks as a and e changed my meds.
By that time I decided I dare not drive all across the country so reluctantly gave up my much loved job. Took a holiday to Ibiza, had a meal of pork, started with SVT and Afib, flew home that night and landed in our local hospital with heart rate of 298 beats per minute from the SVT and afib. Thought I would die the chest pain was so bad and kept passing out every few heart beats. Converted with IV flecainide and IV morphine for the pain. Nightmare.
Put on arrhythmic drug, flecainide, plus beta blocker. That was it I dare not drive other than close to home and havent done so since.
Tips: keep very well hydrated, always travel with a drink handy, always have medication to hand plus a note explaining your condition or an emergency alert bracelet, ensure your husband knows your whereabouts. Come off motorway or pull in as a priority. Ensure your car insurers and DVLA know of your condition. Get emergency help if you feel you are in danger of passing out, have chest pain etc. Dont leave it until you feel awful, pull in safely and take meds before it takes hold. Better chance of it passing quickly that way. We all have different intensities and length of episodes, mine are extreme hence my extreme reaction.
Best wishes, keep safe. You know your body and how it reacts, Plan accordingly. Good luck.
Thanks. Yes do so, I would never advocate giving up on stuff you want to do or need to do. Enjoy a good life, afib controlled doesnt have to be a game changer.
Dont let it rule your life though whatever you decide. I know we are all different but carrying on with normal life is the best way forward unless you have chest pain or are fainting in which case go to A and E.
Tip I learned was to make sure you have a urine bottle in the car if you are out driving. You can get a "shewee" attachment and with an old coat over your lap it can be fine.
Many thanks Bob, I will get the shewee gadget so am travelling fully prepared . I did initially feel unsafe at the prospect of being out alone , but I didn’t get chest pain or breathlessness with the episode , and it’s a lot to give up for something that may or may not happen for ages so am pushing the boat out slowly to build my confidence back
step today and a few further steps tomorrow. We find ways to cope - biggest antagonist- stressing about having another episode.
Good tips above - especially hydration, keeping electrolytes balanced so my tip for travel - take salty snack & water & banana.
The shee thing just didn’t work for me & as far as fast HR - I could cope as long as HR wasn’t my above about 150, if it went over that I got really ill so just had to rest with feet higher than head until HR came down - done that in some strange places - shops, trains, boats & planes & in the park.
Thank you for your help. You are a calm one ! I will remember the tips they are very good thank you . At least eating a bag of crisps and a banana would cheer me up ( I never allow myself to eat crisps !) Maybe I will put in a large Tupperware in the car as well to be on the safe side . Will do a trial run of the shewee thing while the car is in the garage 🤣. When you decided to lie down in shops , trains, boats and planes , what was the conversation with the staff ?
"I have a heart condition and need your help. I need to lie down and elevate my legs asap" or in my case it was "I need to eat something immediately" and they gave me shortbread biscuits. I wasn't in AF but had PVCs and my blood sugar was low on a flight. They were most helpful. I've never seen 4 people sit up and take notice so quickly.
BobD that advice is exactly what my EP told me. Don't let it control my life and unless chest pain, breathless, or feel very unwell, sit it out (as long as you are medicated). I am extremely symptomatic and my afib can go on for 3O plus hours, makes me feel awful and wiped out afterwards. I learn to park it between episodes
Peony4675, it took me a while but think I have mastered it. CBT therapy helped me to distract as I have a rare genetic condition that puts me at risk of kidney cancer. I have annual MRI screening for that and I learned to park that between the scans. With regards to the afib, my EP who is one of the best in his field as a professor, isn't phased by it and tells me it's not life threatening and it won't trigger a heart attack as that's something completely different, has helped me considerably. I do however, like you, feel dreadful when an episode comes in, the anxiety comes from nowhere 🥺
I think the anxiety is justified when your heart is jumping about in your chest like a frog trying to escape from a jar, and you feel wobbly . It’s the out of control that causes the worry . I am a bit of a control freak. I think you have a great attitude I will try and emulate .
I love your analogy of a frog trying to escape from a jar 😂 exactly how it feels! Once it starts with me in goes on day and night - dreadful, the longest episode was over 48 hours, I was whacked afterwards. What has been the longest episode for you? Apparently anxiety is a symptom of afib and not just because we worry about it which I find is a bit strange.
I too am a control freak, seems we are similar.
Anyway, park it I will, still going to fly and travel abroad..As BobD says, you can't let afib control you.
I said to my EP "What should I do if I start with an episode mid flight?"he said, totally unphased "Sit it out". He's not worried so I shouldn't be...
both of my episodes lasted 24 hours and I think they resolved in their own because the things they gave me didn’t really impact the heart rate much . Am totally wiped out for a few days, and I don’t sleep at all during an episode, far too symptomatic . Am not sure about the association with anxiety with me. I have had anxiety very badly at times on and off over a thirty year period. Never caused AF. My first episode was caused by an anti inflammatory which can inhibit the potassium channels in your heart if you are susceptible . Second by sugar and msg which raise your levels of glutamate and make the nerve cells more excitory. Raised glutamate can also cause anxiety and panic attacks. I think there is certainly the potential for AF to cause anxiety . I agree , I will travel abroad also. If you think about your EP saying sit it out if you get an episode on the plane, what choice have you ! You can’t get off and they won’t make an emergency landing, it’s the only game in town ! 🤣🤣🤣
Peony4575 that is so funny can't get off the plane 😂😂 so true, no choice, but like you say it's frightening too. I don't sleep when having an episode either. What meds do you take? Funny enough I take sotalol which is a potassium channel blocker.
Am on Edoxaban and they have given me 50mg flecainide to use as a pip but I haven’t tried that yet. Apprehensive because I don’t do well with drugs . I find the whole thing frightening , but you are right, the only manageable thing is to try and park it while doing all the lifestyle things. I do take magnesium as a supplement but I did that off my own bat. I can’t predict when it will happen again or where I will be so can only prepare in B-road brush strokes. Very hard for a control freak
I would keep a couple valerian root capsules with me at all times for the stress and high heart rate, and would stop binging on chocolate...it's as bad as alcohol for me. I also keep a vial of cayenne extract in my kit in case of angina or a heart attack.
interesting thank you . I don’t know about the substances you mentioned I will look into it. I find total abstinence easier to manage . After a while you forget what the thing tastes like and temptation disappears
Sounds like you may have vagally mediated PAF. I have the same and first worked on the gut (one critical part linked to the VN) no big meals, not late, no additives, less meat, eat slowly in a calm setting with no alcohol or fizzy drinks. The other end of the VN is the brain and that is trickier to deal with. So I covered all bases - no business or personal stress, no late night crime dramas, relaxing evening routine & strengthen spiritual experiences (especially good for reducing anxiety), in my case that comes from prayer and Nature.
Also this Forum has discussed ways of stopping an episode yourself, which I think has the most potential when the AF is vagally mediated eg I have started and stopped AF downing a very cold drink quickly. Also the A&E doctor threatening me with a cardio version put me back in NSR. Many others have been mentioned by members.
Thanks for that advice . I don’t drink alcohol and am normally very good about food. I will tighten it up though . I will definitely try the very cold drink if it kicks off again
I have found to my cost that downing avery cold drink also triggers an afib attack. It seems to me that any shock to the body can trigger afib or put you back in n.s.r. when you are in afib.
Snap I have experienced both ways as well. This probably works best for those with vagally mediated (aka a sensitive Vagus Nerve) AF, perhaps not so much of an issue for others.
Cook your own Chinese food at home, it's much cleaner to cook at home anyway but this way you control what ingredients goes inside. You can find organic even gluten free soya sauce with no MSG, with some fresh vegetables. Again same with chocolate, everything in moderation and when you say chocolate do you mean Cadburys rubbish or actual 70% dark chocolate. There is no harm in having a small block of 70% chocolate with a cup of tea even now and then.
in this case it was pretty much whatever I could lay my hands on in the cupboard 🤣 I don’t buy chocolate but my husband does and normally I can leave the stuff he eats alone . My favourite is actually Lindt with hazelnuts, I like nutty chocolate , I find dark chocolate too bitter . Again I could live without Chinese food , my husband likes it, I prefer Indian
Lots of good advice here. I was thinking that this has only happened a couple of times and that you shouldn't be limiting your life because of it. Just make preparations and have a plan. Re the Flecainide as PiP I would get specific advice. For example - how much initially, how long to wait to see if it works etc. Typically it works better away from food, takes longer otherwise. But I definitely foun it helped to eat about an hour afterwards. Just something carby but not sugar or high fat. Were all different. For some reason a tuna sandwich and cuppa in.A and E always used to help!
Thank you very much . The EP said to take 50mg Flec if AF started and to come into hospital if it hadn’t reverted to NSR in 24 hours . I will be able to ask her more when I go back to see her in March . It was a busy cardiac ward with people a great deal sicker than me. I noticed I had gone back into NSR , waited half an hour and told the nurse . Then the EP appeared . Of course they wanted the bed things being what they are and I was glad to go home. Yes that’s exactly what I want to do be prepared and have a plan. What to do , who to tell , when to call the cavalry . And tighten up on lifestyle . Thank you for helping me
You are welcome. And bear in mind that it's often a combo of things that trigger the response- not just the one. When I look back at my own events and tried to find the needle in the haystack it was nearly always stress + food + not taking time to digest + anxiety. One can never cancel these things from life altogether but if we notice as we go along and allow ourselves to stop and reflect for a few minutes, it can really help. Ongoing journey.
What a frightening thing to happen to you. I had a severe tachycardia episode whilst walking my dog. I wear a bum bag with doggy essentials plus a Sunani (much more user-friendly than a Shewee) and medical essentials for me - flecainide and bisoprolol used as PiP and a snack as I also get low blood sugar episodes. I sank onto a bench and managed the PiP and stayed there until the episode passed, probably about 1/2 hour. I remember you had great difficulty coming off bisoprolol as did I but I found that using it only as a PiP doesn't have the same long-term effect. I use 200mg flecainide which always works really quickly, I have never had any side effects from it, fortunately.
Touch wood, I have never had an episode whilst driving. I do hope you manage to find something that works for you.
You’re finding out the hard way. It took me a while to work things out. For me it’s only 2 squares of chocolate, I ask for MSG free at the Chinese takeaway. No ethanol, this includes alcohol and cough syrups, no fluoride as in mouth wash and toothpaste products. Keep viewing this forum and you’ll get lots of tips and advice to keep your heart happy. Good luck.
Thanks . I did ask for no MSG in my main course but suspect that went by the board as they were mad busy on New Year’s Eve , and of course there would be msg in all the starters . I have been alcohol free for three years so not a problem and haven’t had cough syrup since I was a child . There are so many triggers !
Hi Irene and many thanks . I have just ordered the Sunany. Rather be prepared, takes the what ifs out of the equation. It was frightening, but fortunate it was New Year’s Day because at least my husband was at home and I wasn’t trying to stagger back to an empty house, and he was there to drive me to the hospital . I will speak to the EP at the appointment about rate control pip, and if I have to take flecainide I suppose they see what the response is and adjust from there. I have only been told to take 50mg at this point and I would rather start at the lowest dose. Am going to implement the lifestyle changes in the hope of staving off what I can. I hope you are well
I initially took a lower dose of flecainide (I think 100mg) but it took much longer to work and so it was upped to 200mg and that works well for me. I hope 50mg works for you (and quickly). I am fine, thank you!
I don't have much to add to the great advice you have been given but I can empathize. My AF comes on with such a vengeance and shortness of breath, I have only minutes to take my med, lie down or at least get into a recliner. So being out of the house is a concern for me. I take my phone, PIP, wear a medic-alert bracelet and often tell my husband where I'm going. If I shower and wash my hair I do it when he's home. I don't do well on daily rate control. I'm back on the list for another ablation. Best wishes.
Thank you for replying. I can empathise with you also . I am only taking a shower when my husband is in the house as well. The thought of collapsing is bad enough but I would prefer to do it dressed ! I have just ventured out with the disgruntled dog on my own, no one at home , told no one , with phone, pip and bracelet . I did tell the EP at our first meeting if the episodes develop any frequency I want an ablation asap. Good luck with yours
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