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Should I just sit it out

Sfhmgusa profile image
41 Replies

Hi I am new to the association and so my apologies if this is a common question. I have had six AFib events now they all truly terrified me and I am having one now. after the second saw a cardiologist who diagnosed me with paf but felt anticoagulant not needed. He gave me flecamide as a pill in pocket and told me I did not need to go to A & E if all I had was AFib. This wAs good advice and having had episodes about once every 6 weeks I sat them out and they all sorted out themselves, but it seemed to take increasing time for them to go away because they were increasing I have another appointment on Monday in two days. Horribly I went into AFib just over 36 hrs ago and despite flecamide I still have very irregular fast beats. I am very anxious about not being on anticoagulants for a long episode and also well aware that a&E can’t wont do much other than watch me any advice would be really welcome especially should I take some aspirin just in case

Thanks for any help

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Sfhmgusa
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41 Replies
cbsrbpm profile image
cbsrbpm

Aspirin is not seen to be helpful as it is an anti platelet not an anticoagulant so probably not helpful. Is your pulse rate very high, if so a trip to A & E maybe the way to go. We all understand how AF makes us anxious and anxiety does not help the AF. Try to relax with some deep breathing, sometimes these episodes can go on for days so not unusual for it to last so long. Have you seen an Electrophysiologist who is an expert on the hearts electrics and if not it may be helpful to ask for a referral. Sending a virtual hug 🤗 and hope it all settles soon.

Sfhmgusa profile image
Sfhmgusa in reply to cbsrbpm

Thank you for your kind words and help. My pulse is now slower but irregular so I’m hoping the end of the episode is in sight being really anxious about it is not helping but knowing that the episodes do sometimes go on for days is a real help thanks again

Achant1 profile image
Achant1

So sorry you feel like this, any episode that lasts longer than 24 hours without anticoagulation is dangerous! If your heart is all over the show, sod what the cardiologist said and go to a&e. Paroxysmal can move to persistent afib if it is not controlled properly. All the best.

Sfhmgusa profile image
Sfhmgusa in reply to Achant1

You must be a magician Achant1! As I read your message and thought “ yep! I’m off to Hospital” I went into sinus rythmn!! I feel tired but 10 foot tall! Thanks for your words and possible special magic!

CDreamer profile image
CDreamer in reply to Sfhmgusa

Pleased that you are back in NSR. Personally, and I think everyone has a different attitude/perception, I resisted going to hospital even when my GP called one. Why - exactly as you stated - I got really fed up just sitting in a waiting room - lucky to even be monitored and absolutely no treatment. I was much more comfortable at home.

Others, especially those who live on their own, like the reassurance of being monitored when in AF and that it quite understandable. Some are even lucky enough to be offered a cardioversion - not in my experience. I’ve sat out episodes for days but I have been on anti-coagulants so maybe this is something that you may want to talk to your cardiologist about if you are fearful of stroke risk.

I would also talk to him about a treatment plan because controlling AF sooner rather than leaving to progress is preferable. Flecainide is certainly an option for some but if the AF is breaking through an AF episode it sounds as though you need to discuss next steps. Has ablation been mentioned? If not, perhaps you might want to ask about it. Check out the AFA website for information sheet on questions to ask your cardiologist.

Just my experience locally - My last time in A&E - a blue light affair - I was left without monitoring - then asked to vacate the bed as they had an emergency coming in and the ward was full to overflowing so went and sat in a very full waiting room for 7 hours. Eventually, when my husband blew a gasket because I had gone into NSR at about hour 4 - I had been monitoring myself on my Kardia, they gave me an ECG so that they could discharge me! That sort of made up my mind for me - never again.

Luckily, I hope I am now sorted as I had a Pacemaker implanted last September and have had only one episode since and as I am paced, no real symptoms other than the palpitation feeling but that is much less now.

AF is a chronic condition and although it feels absolutely horrible and we all get very anxious about it, it is not an emergency unless your heart rate goes very high, for a long time, you have chest pains or faint in which case - dial for the paramedics. I was told if AF continued for more than 48 hours when I wasn’t on anti-coagulants then I should go to A&E and I think that is sound advice.

Best wishes and good luck with your appointment and let us know how you get on.

CD

Sfhmgusa profile image
Sfhmgusa in reply to CDreamer

Fantastic advice I really really appreciate it I will take up all your points when I see the heart specialist on Monday thanks once again

BobD profile image
BobDVolunteer

To answer you point on anticoagulation. although some people think AF demands anticoagualtion there is a very good risk assessment known as CHADS or Chads2vasc2 which calculates your stroke risk. If you are healthy. with no co-morbidities you would have a score of 0 or maybe with one other health risk 1, and only at 2 are you definitely to take anticoagulants. If you google CHADSVASC you can do your own checks and decide if you think your consultant right or not. Length of time in AF is not relevant by the way. If you have risk factors any length of time can do it. A well known doctor told us here, "It is not AF which gives you the stroke risk it is the company it keeps."

Sfhmgusa profile image
Sfhmgusa in reply to BobD

That is very helpful I have a score of 1 on the CHADS test, unfortunately I score 99 on the worry/anxiety scale with things like this. 😀 but advice such as you gave helps put that in its proper place thanks

If you havent already seen an EP, I would be working on that. If you are having weekly episodes and they are lasting longer, sounds like the flecainide isnt doing its job. Might be a need for higher dose or different drug. Flecainide is a good drug. Are you keeping your doc informed on whats going on? If your doc has exhausted the medication route you might consider an ablation, which would be done by an EP. One thing that helped me early on was life style changes. I cleaned up my diet, no alcohol, drink mostly water, stay well hydrated, get plenty of rest, reduce stress, no smoking. The anxiety a fib brings is a force to be reckoned with. Learning relaxation techniques, controlled breathing etc helps. Hang in there. It takes awhile to figure out what works for you. It has been 3 1/2 yr since I was diagnosed with PAF. Fortunately I was old enough I could retire 2 yr ago and that helped me alot. Keep us posted on how it goes for you. Keep a written record of when and how long your episodes last to show your doc.

Sfhmgusa profile image
Sfhmgusa in reply to

Great and helpful advice thank you

Gillybean123 profile image
Gillybean123

Hi Sfhmgusa. I find when I go to A&E they are really very helpful. You could call 111 and see what they say. I have called them numerous times. Have you checked your pulse what is the reading. I am on flecanide 100mg twice a day. I had a bout of AF on Wednesday and I took two PIP it took about 24 hours to go back to normal. I went to A&E because I know what my heart is like and my pulse can go up to 250 when I can't walk so I have called am ambulance. What part of the country do you live? I am in Gloucester and they and Cheltenham A&E are very caring and compassionate about AF hope you will feel better soon. There are a few things you can try. First calm down. Then have a large glass of cold even iced water sip very slowly over an hour. Go to toilet try and have a bowel movement. There is a nerve from your brain to your heart which triggers when you go to the toilet. Think it is the vagal nerve (may be wrong) have a good cough. Gets some fresh air. Lie on your bed and relax yourself from your toes all the way up your body. Then try and go to sleep. One of them might kick in. Let me know how you are. Xxx

Sfhmgusa profile image
Sfhmgusa in reply to Gillybean123

Hi Gillybean thank you so much for the information and tips. I am new to all this and it really helps. I am now back in sinus rhythm and have had a wonderful nights sleep so feeling in another country compared with yesterday when after 40 hours of AFib I was very anxious and despondent in hindsight Im sure should have gone to a & e after 36 hrs or so . The hospital here ( Wythenshawe) were fantastic on my one previous visit . Seeing a cardiologist tomorrow with a list of questions as long as my arm!

Thanks again

S

Gillybean123 profile image
Gillybean123 in reply to Sfhmgusa

Good luck for tomorrow. The feeling when you are in AF is quite debilitating then when you are back to normal it is like winning the lottery. I said to the GP the other night people who are lucky enough not to have it don't know how lucky they are. Looks like we are going to have some lovely weather this week so enjoy don't sit in it too long though. Xx

Lilypocket profile image
Lilypocket

Hi

Perhaps Flec as a pill in the pocket doesn't work for you. It doesn't stop the onset of episodes and as yours sound quite frequent perhaps taking Flec every day with a beta blocker (for rate control) may be the way to go. If that doesn't work in your case perhaps an ablation. As was said above seeing an electrophysiologist is a good idea. Arythmia is'nt really dangerous if you are on blood thinners and rate control ( some people live with a permanently irregular heart to a great age 😊) and have no other symptoms It is just very stressful. Glad you are back in NSR.

Take care xxx

Sfhmgusa profile image
Sfhmgusa in reply to Lilypocket

Thanks lilypocket I’m really grateful for the good advice and kind wishes from everyone. The chap in seeing is a specialist in AFib and hopefully able to do the business. I am really well prepared by the help from here to make the most of the appointment

diannetrussell profile image
diannetrussell

We all understand the scary! I find, as much as I hate having to go to A&E in the middle of the night, the whole sleepless, lines in, machines that go bing, it's reassuring to be in the one exact place you need to be if something goes wrong. Some things I find help me are to be pre-emptive, that is, live my life to reduce the likelihood of AF. Minimize how I react to situations so my stress levels stay manageable; no heavy meals after 3 pm, just a small amount of light food if needed. To sleep by 9 pm; back off the TV and anything else stimulating to the nervous system (coffee, sugar, excitement, etc) in the evening; meditate and breathe; if heart is wobbly run cold water over my face and wrists. Stay partly reclined instead of lying completely down. Lay on right side instead of left. And I take CoQ10 supplement every day to give my heart the energy to deal with any raciness or stress and recover faster..... Find what's right for you....

Sfhmgusa profile image
Sfhmgusa in reply to diannetrussell

More great advice and help thank you so much

Hope you are feeling better now I also have par afib since Sept 2018 put me straight on apixaban and bisoprolol my pulse was 200 a minute was wary scary and anixiety have got it bad but I am getting so much better now I do a lot of deep breathing and meditation helps not had a fast pulse for a long time now its very hard but try not to worry it makes it worse

momist profile image
momist

I hope you are now staying well, until the next time. I have always 'sat out' my AF attacks, and yes, they are getting far more frequent these days. To my mind going to A&E is a waste of your time and theirs, as you say all they do is watch you (albeit on an ECG machine). I have a Kardia device stuck to the back of my mobile phone which can do that for me, so that makes it easier for me to relax and know what's going on. My last attack I still had the ladies final at Wimbledon recorded and had missed seeing the match, so I sat down to watch that which helped distract me and keep me calm. If the time of day is right, I go to bed and try to sleep.

I second the suggestions that you should get a referral to an EP. The cardiologists are good at what they do, but they don't seem to have much concern about the electrical side of things, and don't necessarily know the best for you when there's no plumbing fault.

Sfhmgusa profile image
Sfhmgusa in reply to momist

Thank you for your advice. I think the consultant I’m seeing is more of an electrician than a plumber! And I hope he will help me come to decide on next steps. I think ablation seems the answer but can’t deny it is a bit scary to think of..

brit1 profile image
brit1 in reply to momist

I am interested in the Kardia but I just have a Trac-fone, not sure if that will work. Have had many episodes of AF since they started 10yrs ago (thnx to a stupid dr overdosing my thyroid meds) and sometimes just have one episode a year and sometimes more but no idea how fast my heart is racing and impossible to time it as its jumping like a jack rabbit. I usually convert within 8rs or less at home

momist profile image
momist in reply to brit1

I'm sorry, I have never heard of a Trac-fone. The Kardia works with either Android or with iPhone, but it works just as well with a tablet as it does with a phone. I have an old Tesco Hudl2 which will still work with it, and also with my much newer and better Huawei. There have been problems with some high-end phones, which I believe are due to fancy noise-cancelling microphones on them. The current Kadia mobile device uses an ultrasound signal to communicate with the phone, but \i understand the newer ones are using Bluetooth, which should be both more reliable and more compatible with high end phones.

pottypete1 profile image
pottypete1

I have come late to this thread and would suggest that throughout all the replies you have been offered some very sound advice.

It is your heart and your quality of life that matters here. I suggest that if the Cardiologist you are seeing tomorrow is not a specialist in Heart arrhythmias - an Electrophysiologist (EP) then you must ask to be referred to one.

The issue of Anticoagulation should be high on your agenda.

Pete

Sfhmgusa profile image
Sfhmgusa in reply to pottypete1

Thanks Pete I agree anticoagulation is my number 1 question ( probably number 2 & 3 too! ) the consultant is an electrical expert so I move in hope

bantam12 profile image
bantam12 in reply to Sfhmgusa

My GP emailed my Cardio about anticoagulants and his reply was guidelines state and his opinion was they aren't necessary with a chad score of 1, my husband has been on them for years with varying problems so I'm happy not to take them, I think !

KMRobbo profile image
KMRobbo

Best thing is to get out of A fib if possible

My local hospital told me to go to A&E if hr greater than 130 for a sustained period. They always tried to get me out of AFib. I was in 130-190 zone for nearly 8 days once and it was not good.

The other issue with afib is that if no medical people know you have had six episodes they don't know how it is progressing. I had approx 12 episodes before I ended up with the 8 day episode above. I found early on that if I went running I went back I to NSR . Great. But no one knew my AF was increasing in frequency. AFIB begets AFIB. The more you have it the more you will have it. At the 12th episode the magic running trick would not work. The afib had progressed during the previous episodes. (Atrial remodelling?). If I had had medical discussions based on the increasing frequency before the 8 day job, I may have taken a different course which would have avoided the 8 days and a fairly miserable 10 months waiting for the ablation that has subsequently stopped the afib (for now anyway). I don't know the skills of your cardiologist but you need to be seeing a EP (electrophysiologist). You need a plan to stop you going into afib or at least decreasing the frequency and length of the episodes if possible.

Sfhmgusa profile image
Sfhmgusa in reply to KMRobbo

Thank you so much I think ablation seems the way forwards and the chap I’m seeing is apparently highly skilled at this. I really don’t want AFib to be central in my life as it is starting to feel now

KMRobbo profile image
KMRobbo in reply to Sfhmgusa

Get the advice from the EP and then decide: what's good for me or A.N. Other may not be best for you.

songbird74 profile image
songbird74 in reply to KMRobbo

My hospital says go if over 150 bpm for a while

I got to over 200 caused by taking Flecainide without a beta blocker so I now take a higher dose of nebivol with the pip

Kateuk1 profile image
Kateuk1

Hi. I am new to this forum and find it very helpful. I was diagnosed with AF in 2017 and had carioversion in Sept of that year. All was good until a month ago when I woke up in AF . After 24 hours my pulse was still 125 so I called A&E for advice. They told me to come in and I was fast tracked and saw a the A&E consultant . He offered a carioversion immediately and when I expressed surprise he told me he was”Jack of all trades” and was happy to do it! After reading the comments here, I realise I was very fortunate.

I take a blood thinner and 1.25 Bisoperol. I was taking a higher dose, but it slowed my pulse to the low 40s and I felt lethargic. I haven’t been offered anything else, though I was told my arteries have mild narrowing, so other drugs are not suitable.

My main worry at the moment is that I am going on a coach trip in USA in a couple of months and I have no idea what to do if I go into AF. I monitor it on my blood pressure machine which also shows if AF is present, but it is too bulky to take with me.

Any advice would be welcome. Thanks

Sfhmgusa profile image
Sfhmgusa in reply to Kateuk1

Hi Kate I have a Kardia EKG device that I carry with me on my phone it is tiny and works really well they are not cheap but are in my opinion really good

Kateuk1 profile image
Kateuk1 in reply to Sfhmgusa

Thanks. I’ll have a look

Sfhmgusa profile image
Sfhmgusa

Thank you I really appreciate your clear and strong view and after a 40 hour period where every flicker of my head felt like the onset of doom I am going to be very keen to go to anticoagulant tomorrow!

I have Flecainide as my pill in a pocket. My original instructions were to report to the hospital if it did not convert within 3 hours. On my last appointment I was told to wait 12 hours before taking another 200 mg of Flecainide and if that didn't work, then I had to go to the hospital.

I recently came off Xarelo after taking it for 10 months after multiple DVT's in my leg. Honestly, the thought of going back on an anti-coagulant, with all the side effects I experienced, scares me more than the thought of not being on one.

Thankfully, my episodes are now few and far between now that I have my diet under control. The doctor agrees that eating carbs, which were just fermenting in my gut and producing gas, caused my bloated stomach to press on the vagus nerve triggering my A Fib. Yesterday, I slipped up and my stomach was really bloated and I could not stop burping. My wife warned me that I would have an A Fib episode. I took my doctor's advice and chewed a couple of GAS-X tablets. I was unpleasant to be around for a couple of hours, but I got rid of the gas and did not go into AFib last night.

Brianboru profile image
Brianboru

Get back to your doctor. At least get an anticoagulant such as Rivaroxaban while he sorts out an examination for you. It will go worse if not checked now

engvey00 profile image
engvey00

I am new to AFIB conditions myself and have been placed on Eliquis and Flecainide about 6 weeks ago. I have had two episodes since I have been on these drugs including the longest one that I have had which lasted for 8 hours. I am not terrified by this as I have no other symptoms and so far all have come back to normal on their on. I had one major problem in which I passed out and fell over backward headfirst onto a concrete floor which terrified everyone around me. I elected to be transported to the ER room for testing remaining overnight. I revived after the fall in a second or two and felt fine. My heart rate was about 120. Xrays and a brain scan showed no injuries and I did not a scratch, bruise knot or anything from the fall.

One thing from reading comments is that people sometimes use acronyms and I wonder if there is a list of the ones used on this site somewhere as at times I don't have a clue as to what they mean.

Marytew profile image
Marytew in reply to engvey00

Hi,

Towards the top of this page, on the right, you will find 'Abbreviations and Acronyms' which should help.

engvey00 profile image
engvey00 in reply to Marytew

Thanks, it does.

whiteface profile image
whiteface

I had my first bout of AF over 10 years ago and now have AF permanently (it is evidently an unusual type of AF as there are no ill effects, and whilst me heartbeat is irregular it remains c55bpm which is what it always was. I live a perfectly normal life). I used to get very worried about it, but now that it happens all the time I'm fully relaxed. And on the advice of a cardiologist I'm not on any medication because the negative impact of taking anticoagulants outweighed any benefits.

Sometimes the best thing is not to take anything, although people find that very difficult -- this is usually reflected in the shocked comments I get whenever I post something here.

At one point 5 or 6 years ago I was told by a cardiologist that the next time I had an AF episode I should go to the hospital and take "pill in the pocket". So I went and was then told (by a different cardiologist) to go home and sit it out as the risks associated with "pill in the pocket" outweighed any benefit. Apparently "pill in the pocket" can really mess some people up (I don't know what percentage) which is why the first time you take it some doctors suggest that you do it in a hospital.

I hope this helps. We are all different so whilst what I am doing works for me it may well not work for you. But at least you can see there are a range of ways of dealing with this.

secondtry profile image
secondtry

Latecomer to this discussion, so to avoid repetition I'll just say like me it sounds like you may have vagally mediated PAF (hence going back into NSR on deciding to go to hospital) - read up more on this to learn how to use it to come out of AF. Also, stabilising the AF is a high priority, for me that meant upping a regular dose of Flecainide from 100 (still getting episodes) to 200mgs/day on my cardiologists advice, who favours regular doses rather than PIP. Hope something there helps, good luck.

Sfhmgusa profile image
Sfhmgusa

An update after my visit to Ben Brown a NW uk based cardiologist last night. He was very reassuring and whilst he said it was not in his view, essential he has prescribed anticoagulant on the basis of “ if you are really worried .. why not?”

He agreed not much point in going to A& E when in afib with no other symptoms , and explained in detail ablation and likely success if things get more persistent.

So I feel much better informed but I want to thank everyone on this forum ... the inputs when I was at a very low and anxious ebb were very helpful and made my visit last night ( and my questions ) more useful ....thank you everyone. I did not reply individually to everyone but I appreciated every word.

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