Af

Hi

Been in AF for nearly 16 hours.

It's not hugely fast,but uncomfortable.

I haven't gone to the hospital as I felt when in last time I was wasting time.

So I've slept and hopes it would flip back. It hasn't.

So I've now taken today's meds.

10 mg bisopolol. I'm hoping it will he?p.

Any advice. Please this one is quite scary.

Husband has just left me to it.

Can't talk to my daughter she is four weeks before baby due. Cannot frighten her!

46 Replies

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  • Totally crap condition. I would go to A&E for peace of mind. On a personal level, my AF episodes started very infrequently and lasted 2-3 hours. They eventually occurred for 21 out of every 28 days and lasted between 24 hours and 7 to 8 days. Consider ablation as this has improved my QoL massively as I have only had 2 AF episodes each lasting less than 2 hours in 18 months post ablation.

  • About half hour ago, went back to normal rhythm.

    It's just so debilitating and scary.

    I need sleep.

    Thank you mikeymike7.

  • Hi Gwyn

    If you are in AF (now or in the future) go to your GPs surgery to get a ECG so it can be on record. If the surgery is closed go to A&E.

    It's important it's on record. A lot can be ascertained from the ECG and next steps can be planned.

    Like most of us, you don't want to trouble the doctors but that's what they are there for.

    My episodes started in 2000 and built up to 12 hours at night every 9 days or so. I was put on soltalol then bisoprolol without effect but then was prescribed flecainide as well and I haven't had an AF in 8 years.

    It's likely that I may need more intervention (ablation etc) but up till now medication has controlled it.

    It's an annoying condition and can be scary but we all have to learn to live with it as best we can. Bill

  • I am on flecainide been very good so far.

  • Bill, when my current AF started i didn't want to pester A&E as i didn't think it was an emergency (my AF isn't debilitating)

    I did however request an ECG at the local GP surgery. I was told i needed to see the GP first, but the GP didn't have an appointment slot until another 2 days.

    When i did get to see the GP she just listened to my heart, confirmed it wasn't normal and put in a referral to the local EP.

    After a couple of weeks i contacted the EP secretary, who said she hadn't received the referral (Grrr!)

    I asked the GP to resend the referral, and i'm now waiting for confirmation of receipt by the EP again

    P.S i was previously put back into NSR by flecainide at A&E, i was given flecainide as a PiP, but the PiP hasn't reverted it this time. Maybe a DC cardio again or ablation route to consider this time. My episode before the A&E visit was rectified with a DC cardio and kept me right for 2 years

  • Yup like so many of us, you don't want to trouble A&E. However, both my GP and the A&E doctors say try to get an ECG if you think you are in AF. They like to see something tangible. Without it they have to rely on your description of an episode and frankly that's useless. The NHS is all about putting patients first. Don't be in the back foot, demand your rights. That's not to say take them for granted and abuse your rights of course, as some people attending A&E do.

  • Go back to A &E and get them to review what you are doing. But most importantly get yourself referred to an EP - a specialist cardiac consultant who is basically an electrician of the heart who can better diagnose what needs to be done. If you've already gone down this track then ignore my comments.

    Good luck.

  • Only saw a consultant once who told me

    It won't kill you get on with life and sent me home..

    Great!!!!

  • Not helpful but that's exactly what was said to me

  • Chris 147--same as my reponse to Gwen

  • He's absolutely right. Be the boss. There's far worse out there.

  • Rubbish Consultant then!

  • gwen53 That consultant should lose his licence to practice medicine.

    Find another doctor. Make sure he is an electrophysiologist--try to get an excellent one--look up his background and experience. Bring copies of ALL your ekg's. In the USA these are your property and you are entitled to any medical record or info about your medical conditon.

  • What is an EP? Just so I know.

  • An EP is an electrophysiologist. He specializes in atrial fibrillation and other abnormal heart rythyms and believe me there are about 6 different ones. If you want an excellent description about what afib and ep's are go on the website of University of Rochester Medical Center and look for patient info about afib there is a great written and visual description. Also go on the website for STRONG MEMORIAL HOSPITAL webasite and look up the electrophysiology lab and what they do and what afib is. Youcan also look on the websites for Cleveland Clinic and Mayo clinic. These are hospitals in the USA. Mayo is 1st, cleveland 2nd and Strong 3rd best in the USA for heart problems. Look up the background of Dr. Mehmet AKtas at STrong memorial hospital in rochester NY-- this will give you an idea of what the ep should be like.

  • Gwyn, an EP is an Electrophsiologist (hope the spelling is correct) he/she is a cardiologist, a cardiac consultant who specialises in the electrical activity of the heart and who is the 'ultimate' person who can suggest a way forward. Most GP's are crap and have no idea what they are doing anyway, next stop is A & E who are much better equipped than your GP, next stop is a cardiologist but the ultimate is an EP. If you go on the AFA website you should find a shedload more info on EP's etc etc. including one near you (if you are in UK). Do give it a go if you haven't already done so.

    John

  • Thanks. Will do.

    I feel such a fool. But also it is destroying me inside. Feel a failure.

  • Hello Gwyn, let's try and sort some things out. AF effects over a million people in the UK. None of us want AF and there is absolutely no reason why anyone should feel either foolish or a failure. AF for most of us is a long journey and the fact you have found this forum suggests that you are not averse to self-help so why not see if there are any support groups you could join. If you live in the UK, you will be able to find details of these groups on the AFA website.

    I am not a medic, but there are two important things to consider.

    1. AF in itself will not kill you

    2. AF significantly increases the risk of having a stroke. If you are not taking any anti-coagulants, check out your CHADSVASC score from the AFA webpage and seek medical advice as soon as possible.

    Family support is important so try and keep them in the loop although it can be difficult sometimes. Just remember, you are not foolish or a failure, because if you are, then we all are and that just aint the case!!!

    Best wishes, John

  • Gwyn, if I remember correctly you live in North Wales. To see an Electrophysiologist you will need to go to the Liverpool Heart and Chest Hospital at Broadgreen, Liverpool. I was referred by my Cardiologist at Ysbyty Glan Clwyd to see Dr Derrick Todd.

    The easiest way to get to Broadgreen is by train. I will explain how to get there if you require details.

  • Hopefully these well informed replies will give you help and confidence in your future management as you don't want to be worrying as this in itself will increase your risk of af episodes

  • gwen53 Hi Gwen do not feel bad about yourself because your dr. is stupid and you did not know what to do. I have had intermittant scary afib moment s for a long time before it was actually correctly diagnosed as afib. I have also fired 2 cardiologisdts because they were stupid and I actually told one of them that he was stupid. I am not suggesting yhou be this rude, but maybe you should. You can refer yoursself to an electrophysiologist if you find a good one; call the office; say you MUST see him; FAXC copies of every abnormal ekg you have ever had; if the provider of the EKG does not want to give you a copy tell that person it is your legal right to have copies of all medical info about yourself. When the electrophysiologist sees your abnormal ekg's he will agree to see you. general cardioloist do not know any thing and actually do not know how to accurately diagnose the very detailed ekg with all its information. Like you, at the beginning I knew nothing. It took a lot of reading and looking for info by myself and my husband to actually accurately get this treated properly. The most accurate things that general doctors told me is " your ekg is abnormal"-but mostly this was because the computerized ekg send out a printed message concluding the ekg is abnormal--ex. I have asthma-on 2 occassions with difficulty breathing I thought I was having an asthma attack and went to the emergency room because the broncodialtor spray was not working. I much later discoverd I was having an afib attakc and that the bronchodilator medicine is actually a trigger to cause more afib. Now why would I have known that at that time? The ER treatment was not working well so the ER doctor did an ekg and said "your ekg is abnormal"-he said I should see a cardiologist. This was 2 am---what should have happened is the er doctor should have called the cardiologist to see me in the er. finally another bronchodilator treatment allowed me to breath more normally so I left -but Istill had an abnormal ekg. Most dr's do not know how to treat afib see an EP!!!! fax your abnormal EKG's and he WILL see you. The doctors are not in charge of your health--YOU are. so take charge. Do not blame yourself for your medical conditoin. Get more info and be objective --then you canmake an informed decision about what you should do. The doctor who says "don't worry afib won't kill you--go home and relax" is so wrong. First of all being in afib gives you a 400% greater chance of having a stroke--and if you do not stop your heart from being in afib all the time this acitvity changes the architecture of your heart leading to further cvd and also increases the areas of your heart subject to afib-- do not get upset by this "scary" information. You are not at that level yet. The piont is to address the afib appropriately so nothing happens to you and you are healthy and fine, as you will be.

    when these doctors tell you it is no big deal, I think he wants to hide the fact that he does not know what to do. An appropriate thing for him to have told you is that your medical issue was beyond your area of expertise and t that you should see an electrophysiologist for an evaluation. If you don't have a good one in the UK come to the USA and go to Strong Memorial Hospital. I think they put you and a family member up in a local hotel, since you travel a distance.--but I do not kjnow how insurance works--since they accept all insurance.

    Good luck hope you feel better eventually.

  • Bless you for worrying about me.

    I had an ECG and that showed everything was ok.

    My Dr is lovely.

    But the cardiac unit us just a bit lax a daisy. In other words you really have to be dying!!!!

    Which I'm not.

    I like many more get scared.

    It's scary.

    I'm about to welcome my fourth grandchild in a few weeks I don't want to be like this.

    So I'm keeping calm and taking the meds. God willing I will be ok.

    But thanks to you and others I feel lucky to know you all.

    Because YOU CARE.

  • Thinking of you.

  • No such thing a failure, you're just starting BUT you need proper advice. and treatment. Basically the consultant you saw is correct - AF won't kill you. BUT, it is killing your quality of life. My understanding is that under NHS rules you are entitled to select any consultant you choose, anywhere in the country. don't be fobbed off, do the table thumping if you need to. If you aren't happy with your GP, change the GP, sack the old one. Have you had a CHA2DS2–VASc score DONE BY YOUR GP OR cARDIAC CONSULTANT. basically its a formula to assess your stroke risk. This will be an indicator as to whether you should be on an anticoagulant. You may also benefit from a cardioversion, another technique for getting your heart back into NSR (normal sinus rhythm). Again there is shedloads on these topics on the AFA website.

    Last Nov I had a partial knee replacement and chose the Orthopaedic Consultant I wanted. And I got him - ended up having surgery in a private hospital as an NHS patient. I wanted a surgeon who did only knees, some do knee and hips. Nothing wrong with my hips, just my knees. I wanted the guy to concentrate on my knee, if he found something wrong when he opened the knee up I wanted his experience of knees to fix it. See what I mean. Also previously, sacked my GP as I wasn't getting the support I wanted in monitoring my Warfarin medication and my INR. So take heart.

    so there we are, its your life, you own it, Make all these turkeys dance to your tune, not the other way about.

    John

  • Very wise John, knee surgery is the most complicated surgery to have and the one most likely to go wrong!

  • Gwen. It's true that AF won't kill you directly but AF can cause other things to kill people but that's usually because their AF is uncontrolled because they don't know about the AF!!! Your AF is known about and it is controlled even though you get incidents. Therefore you are in a better position.

  • Gwyn you are not a failure, but the electric system within you heart is misfiring - period. You don't kn ow what you don't know until something like this happens to you.

    My experience of A&E was similar to yours, waste of their time and mine as no treatment ever offered and after doing that a few times decided I was far more comfortable at home. However, there is one advantage in that when you present at A&E you are registered as an emergency and a few logs like that can help speed up your treatment. My GP surgery could offer me ECG trace so as that was far nearer I went there and if they were concerned about me would keep me there until I felt well enough to go homel

    I saw an EP after 7 years of no or poor treatment, letters between cardiologist and GP and getting nowhere and AF progressing. I saw an EP and had treatment by RF ablation within 2 weeks.

    Not for everyone but it is the closest to a cure currently on offer but it is not considered a life saving procedure, therefore it what you know and how to get what you know that is essential. Knowledge is power so go to AFA and read up and find out as much as possible and become much, much more assertive.

    Ensure the consultant you see is an Electrophysiologist (EP) and if there is no one in your area, travel to see one of your choice, it will be worth it.

    We have all been were you are so do understand and although the consultant may sound harsh, the reality is maybe that they either don't know enough about AF (cardiology splits into 2 - one for the structural and plumbing side and the other for the electrics) or be unable o offer you ablation through lack of resources.

    Please do ask any questions you have and we will try help answer the. Or at least point you in right direction. This forum is fantastic support system and you CAN just come have a moan and sound off. Coping with the anxiety this condition causes is a huge part of coping with AF and journaling such as this can be very helpful.

    I had never heard of an EP until I came to this forum and had had AF for 7 years.

    Best wishes CD.

  • In fact cardiology has split further because I see a heart valve specialist consultant and he has a big team!!!

  • Hi gwyn53, my episodes usually last from 16 hours up to 30 hours. I have always been told to go for help, if you start feeling dizzy, or feeling sick or chest pains, short of breath. It is frightening but have been told providing you are on the right medication like warfarine or the equivalent you should be fine. Try to relax and ride it out.

    Best wishes Rienij

  • Hi Gwyn. There are various ways to control AF and it's not helpful of the consultant you saw to just say live with it. Bisoprolol is what lots of people take but there's stronger medication that can be taken just when AF happens or it can be taken every day and if you don't fancy that, ablation might be an option.

    As has been said, the person to see is an EP and your GP can refer you. You might have to see a cardiologist (who deals with all heart problems but isn't a specialist in scary rhythms) first. Ask your GP to send you to a more helpful one.

    Both cardiologist and EP would be helped by various tests, like an echocardiogram which would show how your heart is working and a long term ECG (electrocardiogram) which would record your heartbeat over a day or 48 hours or a week. Have you had either of these?

    Also helpful would be an ECG taken when you have AF. If it's ever convenient, go to A&E or your GP surgery - just walk in and ask if anyone is free to do an ECG.

    Ask for a copy of any ECG that you have. Take it with you to any appointment with a consultant because the hospital's copy might go astray.

    It's also something to show your husband so he can understand that AF is when the heart's electrical rhythm goes bonkers and it's not a nice feeling. As the Australians say - a few kangeroos loose in the top paddock.

  • Gwyn.

    You are not a failure just very unlucky to have AF. The fact that you suffer and notice it is just like most of us on this forum have now or ones like bob did.

    The big advantage of going to A&E is that they not only do an ECG they may end up doing 2 or 3 or more ECGs but equally importantly it is formally logged and then on your records and, in addition, while you maybe in a corner they are monitoring you and in my GP's words help is on hand immediately if things do take a turn for the worse (eg BP drops or rises).

    A tip is dial 999 and they will send a paramedic either in a car or in an ambulance. That way you get help sooner, an ECG much quicker, and also if paramedic does decide A&E is needed you get fast tracked.

    Also another advantage is that the recordings may pick up transient situations. This has happened both the times I have been 999d. I am in persistent AF. Both times ECGs have shown a partial bundle block but 4 hours later an ECG has shown back to "normal" persistent AF.

  • PeterWh I also had partial bundle block, afib, premature ventricular contractions, and beginnin minor heart block all going on at the same taime but not all the time---which basically scared my gp so much I thought she was going to scream--however I had at the time an appointment for an ablationu with an electrophysiologist--so she callmed down and took a finger prick test for a mesure of my INR (at the coumadin lab in your medical facility)--since the INR was only 1.8 she sent me to the coumadin lab whered a nurse specializes in onlly keeping your INR between 2--3 while you are on warfarin (blood thinner)-so you do not have a stroke when in afib. In retrospect I can see why the md got so scared. I got copies of all my ekg's. Even with no expertise I could tell thye were terrible. One question what exactly is pARTIAL BUNDLE BLOCK.?

  • In essence it can be right or left. Look it up for a proper definition and explanation but I think in essence it is when the electrical signals don't reach the ventricle properly. I think usually is temporary.

    On both occasions when I have been taken to hospital by ambulance I have had partial left bundle block. However it has rectified itself within 6 hours when HR and BP has settled down.

  • As everyone above says, Gwyn, you have the right to get help - don't think you are just bothering people. I had a paramedic sent out to me after ringing 111 because I didn't want to bother the 999 service! (He even gave me the ECG readout). I wish you all the best.

    PatAF

  • Have you tried a drink of ice cold water...or put your face into a bowl of ice water..?...sometimes these things help....its horrible isnt it....if it carrees on i wud go to ED.....xx

  • Wait until you have it full time. Seriously, once your in permanent AF it's easy to get used to. 6 years now and counting and just completed a 6 mile walk in hilly country. Get your rate controlled and all will be well. Other walkers without this condition suffered worse than me!

  • What's interesting here is the difference in medical cultures. I lived in the UK a long time so I've seen both. I went into AF about a month ago (could tell by pulse, listening to heart with handy home stethoscope), called an Uber and calmly proceeded to local A&E about 2 miles away. I'd had AF once before only. I got a row from them there for not calling an ambulance LOL ... I went back into normal rhythm with a drip after a day etc. On discharge (they put me in intensive care with AF by the way on oxygen) they again told me to call an ambulance because as I'm intermittent AF, the sooner they can stop it, the less likely it is to carry on. And I was put on Xarelto (for life) in the hospital to mitigate stroke risk (I had a TIA after first AF episode, always been a bit of an overachiever haha)

    The message here -- if there is one -- is that what we are told is 'right' or 'wrong' by a hospital is only one point of data. You, as the patient or even more importantly as a person, have the right to make informed decisions. AF brings a very high risk of stroke. Stroke can kill you or leave you badly disabled for life. So be aggressive -- not just for your peace of mind (and you deserve peace of mind) because the longer you can stay stroke-free (hopefully forever) the better for you and the NHS!! And if anyone gives you hassle about that, you can ignore them (because they don't know/are an idiot) or you can come back with 'I'm trying to save you money by not having a stroke.'

    I can see you're a loving Mum and I'm a Mum too -- sometimes I have to say to myself when I don't feel like making another phone call or questioning something 'what would I do for my child?' And then I get aggressive.

  • Well said - the tail end of yr first paragraph !

    I was 9 hours from onset to diagnosis and start of treatment! YES, AS A NHS PATIENT. Once the first 4 to 6 months were outta the way, once the triggers were identified and action taken accordingly, it settled down, progressively getting less and less! My last recorded AF event now was in April 2015 !

    Such a fast AND accurate diagnosis has beyond doubt enabled me to keep this bloody thing outta my life.

    I cannot comprehend the stories I read on here about the time it takes to get a diagnosis and treatment.

    The worse thing about it for me is occasionally the Bisoprolol drops my HR too low, 46 to 48 bpm.

    John

  • Hi Gwen. The first thing I would suggest is don't panic. I know that is easier said than done sometimes. When my afib would go that long I would take an extra pill, which in my case is propafenone. I found that sitting in my easy chair only partially reclined and breathing a little bit deep, and a little slowly would oftentimes put me back in to normal sinus rhythm. I also take diltiazem 240, once a day. I always keep some 180's on hand too. My doctor told me it was ok to take an extra one of those also when locked in afib. The longest episode I've ever had was 22 hours. I was going to go to the ER as soon as it hit 24 hours. Luckily for me, that didn't happen. I had an cryoballoon ablation 41days ago. So far, so good. You may want to consider having one yourself. I wish you all the best. 😊

  • Thank you.

    I saw my Dr yesterday.

    No extra meds.

    I take 1 x 10 mg bisopolol

    He says it's enough. Plus 3 x 40 VERAPAMIL

    I've slept so well last night. Fingers crossed eh!

    It's very distressing.

    I appreciate all your messages.

    Truly.xxx

  • Gwyn if you are happy and reassured with that , then fine. Treatment for AF is for quality of life and as you will have gathered from all of the comments above, everyone is different.

    It is a distressing condition but there are other treatments out there so do be advised that other doctors may have different opinions.

    Please go to the AFA website and read about the possibilities because these days treatment decisions are a collaboration between doctor and patient but you need to be knowledgeable in order to make the decision of what is or is not right for you.

    Very best wishes CD

  • I have been pushed from pillar to post.

    My arrhythmia nurse just makes me feel like a waste of time.

    I will see her when she feels like sending me an appointment.

    I've see her twice in 15 months.

    I only saw a consultant because he just happens to be there.

    My GP was and is very supportive.

    By the way I work for the nhs.

    I am up for a formal warning for having time off.

    It's a great place to work!!!

    What can I do

    I wish we had support everywhere but we don't.

    This site keeps me sane and very supportive always.

    Thank goodness for you all.

  • You can be more assertive, especially when you are being warned for time off work - that could work in your favour.

    You have the right to be referred to an EP of YOUR choosing - your GP can and will do this for you. 3 years ago I was in a similar position, I learned that I have to be assertive in order to get treatment. Great that you have a supportive GP - what about asking them what they would do in your position?

    Ask open questions in an assertive, non-emotional way. Demonstrate you have some knowledge that there is more treatments available and say you are not happy with the service you have received so far from that consultant/arrythmia nurse and ask for a second opinion.

    Hope that helps - CD

  • gwyn53 do you have an electrophysiologist? have you been evaluated by an ep? who prescribed your med, an EP, a general cardiologist, or an internist/family dr.? have you had any kind of cardioversion (ablation etc)? An EP should be able to advise you. Are you aware of the fact that beside the rx. use, ther are certain things that can trigger a loss of NSR and accelerated heart rate. What is your bp, heart rate, mean arterial pressure ( needs to be way above 65), For being in afib you usually need a heart rate above 120 and an abnormal sinus rythym . Triggers that can put you into afib or lose the NSR can be ccertain meds, even your afib med if your intake of magnesium and potassium are too low ( which is depleted from your body by the afib med). It is necessary to replace the magnesium by food and supplements --the supplements should be 3 hours apart from the afib med or they bind together and both do not work.Also do not take too much magnesium. Caffeine, large macrolide antibiotics, quinolone antibiotics, sugar, salt, processed foods, too much or not enough exercise and many more things can trigger afib.

  • gwen53 Has any e cardiologist fitted you with a HOlter monitor (I do not know what it is called in the UK)--this is a 24 hour ekg of your heart, transmitted to an office computer by the blutooth ands cellphone attached to your waist and the moinitor --you have electrodes and wires. It can give an ekg, lists what percent of the time you were in afib, your highest heart rate, and other info that can help an electrophysiologist (which is the specialist you should see) evaluate your condition.

  • Tonight back in AF.

    My husband just can't understand.

    My daughter who's expecting wants me to get rid of all unnecessary stuff.?

    But the stress of it all has triggered it again.

    I'm so depressed. I've splashed my face with cold water,i want to cry and shout.

    It's just so unfair.

    Telling me I'm being stupid or shot help!

    So dow.

    I sorry.

    If to write something.

    Sorry

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