3rd time in 8 months rushed to A + E with AF

Sorry i'm new to all this & never blogged anything, probs got it all wrong & should be writing this somewhere else.

Had AF for few years now, Heart would always manage to kick its self back in to rhythm.

Lately it has got worse & feel so unwell with it like I will collapse & feel like I have ran a marathon.

last year I had an episode that lasted 12 hours went to GP he sent me straight to hosp. Arrived at aau then HR reverted back to norm rhythm.

Referred to a cardiologist & diagnosis super ventricular. Had holter monitor, ecc all come back norm. No meds prescribed.

Yesterday morning woke up 5.30 having an episode, was coping quite well until chest tightening breathing difficult & feeling of collapse. Straight to A+E at 8.45 seen put in resus all wired up scary is an understatement.

HR fluctuated 190-205. At one stage I was losing consciousness, Why did this happen & is it normal ? they managed to reduce HR after few hrs with drip & drugs. I was sent home with prescription of flecainide for when I have another episode. I am due for follow up appointment with cardiologist again.

AF runs in my family, brothers, nieces. IS IT HEREDITARY ? My brother suffered with AF for years sadly he passed away 18 mths ago, he had a cardiac arrest he was 51. We are still unsure if this was related to AF. He was on medication for his AF he had type 2 diabetes.

other than that he was a healthy man.

Thank you & look forward to replies, comments etc :) xx

12 Replies

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  • Hi Krich

    You have nothing wrong, in fact by posting you may have done something very right, because here you will find fellow sufferers and people who really understand.

    OK can I ask first and most importantly, are you on an anti-coagulant, warfarin or similar, because you need to be and urgently.

    Many people suffer like you from these episodes, and flecanide if often prescribed to try and calm them, it's probably what was given to you in the A & E in the drip.

    It's very scary and we understand that, but please remember that although it seems like it at the time A Fib itself is seldom life threatening, and it's really hard to remember that when you are in A & E and we all know that.

    Noticing where you are from, can I recommend Harefield if you get a choice of specialist referal, they are great there, and really understand A Fib

    Re hereditary, there have been some studies which say it is, and you refer to your Brother was he under attention for his A Fib?, Only there are associated heart conditions and these are much more likely to be hereditary, and no-one really knows if AF causes the heart problems or the other way round. Either way a good Cardio/EP will be checking you for both.

    OK what's next, well lots of tests probably, firstly you have to be on warfarin, the real risk of A Fib is stroke not heart attack, so get you into an anti-coagulation clinic. When you see the Cardio, an ECG certainly, probably an echocardiogram and maybe a CT scan. You can expect to be put on some drugs, either a rate control drug to control your heart rate such as a beta blocker, or a rythym control drug to try and control the A Fib (Flecanide is a rythym control drug)

    Lastly is all this normal? well normal and A Fib don't really go together, we all suffer from the condition in different way,s but everthing you have reported would appear to be what others go through in their episodes.

    And of course now you are the right place, read lots, make lots lots of lists of questions to ask you cardio, and if at any time you feel the need post here. Everyone here has been through what you are going through, we are here to support

    Good luck

    Ian

  • Thank you Ian for your quick reply.

    The hospital doctor only gave me Flecanide to go home with, never did they mention an anti clotting drug.

    When I go to cardiologist appointment I will bring this to their attention.

    My brother was on meds for his AF, it was a rythym control one, not sure which though. Autopsy revealed no heart disease or any other heart problem.

    I had an echo cardiogram November last year & all was normal.

    Doubt if they will do another one on me.

    Fingers crossed I will be referred to Harefield,

    I know its the best heart hosp in uk.

    Thank you again Ian for advice & support

    I will definately be writing notes & getting more info about AF

    kind Regards Karolyn

  • HI again Karolyn, can I just re-post this message from the same board and someone who calls himself "Trouble" whereas I would describe him as anything but. But please read it, and then think about seeing your doctor NOW don't wait for the cardiologist

    "Hi all,

    I've been reading comments for some weeks now. I've learnt alot about AF and the drugs and procedures available deal with it.

    KKI001 was the first to mention having had a mini stroke/TIA. At the age of 68 I had AF diagnosed but told by one Dr I didn't need to go on Warfarin as AF was not constant and I was on aspirin another Dr advised it was constant I should go on warfarin. At the same time the new anticoagulant drugs were about to be licensed for AF so I was looking into them.

    2 weeks after the conflicting advice on taking warfarin - I had a big stroke. Fortunately I woke in the night, knew I was having a stroke & got to the hospital where they were able to thin my blood etc.

    I was still left unable to walk or talk and still with constant AF. Nearly 2 years after alot of really hard work & effort, I'm able to walk and talk but it has left my memory shot to pieces, my right side weak and so many words simply lost to me. I've got all the usual symptoms of AF plus the post stroke symptoms. Fatigue and breathlessness are the worst. Illogical - but true - I'm too scared to go anywhere other than Dr, hospital or speech therapy in case I have another stroke. It's awful going to visit a daughter and having to leave after 10 minutes because I'm having a massive panic attack I cant control! I'm now going to work on this illogical fear having dealt with speech & mobility.

    I know my GP and the cardiologists who I deal with know less than you guys!

    Tim and the rest of you, please keep pushing the importance of warfarin for all AF sufferers both here on this website and to all who will listen!! "

    There you go Karolyn, straight from someone who can really tell you the consequences

    Wishing you lots of luck and staying well

    Ian

  • OMG Ian

    Only just read this, I am going to see my Doc today, can't believe they never prescribed anything after my last episode.

    Thank you for letting me know.

    I will keep you updated on how I get treated.

    Karolyn :)

  • Krich,

    First welcome to the forum. We're happy that you found us, But wish that you didn't need to.

    As Ian said "you are in the right place" All of us here suffer from AF and can understand exactly how you are feeling. You stated that you have had AF for a few years and now it's getting worse. That is the story that is shared with most AF patients. AF is a progressive disorder and gets worse over time due to the heart developing more electrical pathways. This also causes it to happen more frequently. Mine started with 1 attack a year (13+ years ago) and increased to 2 or 3 attacks a week.

    Your definition of how you feel is the same as I used many times. "I was just sitting on the couch and all of a sudden I was thrown into the middle of a 20 mile marathon" Also when it was over I felt like I had been hit by a truck. There are many reasons for this but the most common is: Because the heart is not pumping properly the blood pressure can bottom out (get really low). This causes many symptoms including muscle cramps, headaches, dizziness, shakes, vision problems and many others.

    Your statement about the Drs not finding anything is normal. AF really knows how to hide. Every time you try to have it checked... It will stop and there is then nothing wrong with you.

    About your attack yesterday. It is not uncommon to have those symptoms. Each of us are different and AF can cause different symptoms. I have read from many that they feel faint and pass out. Some have AF and have no symptoms at all. It is very individual and effects everyone differently.

    You were given the meds as, what is called, the "PIP" (pill in the pocket) method of control. That can be effective for those who have very infrequent attacks. But if yours are happening more often then you probably should be taking meds that stop it from happening instead of just reacting when it does happen. Many take the same med you were given everyday to hold off the AF.

    About your cardio. Your best chance of getting hold of this is to learn. the main AFA site has just about everything you need to know about AF. Read, Study, Learn and Understand what AF is and what can be done about it. Having this information will greatly increase your chances of beating this condition. Many cardiologists treat AF as more of a nuisance that a real problem. Some are very good at dealing with standard heart conditions but are "in the dark" when it comes to a heart rhythm disorder. An Electrophysiologist (EP) is a cardiologist that has specialized training in the rhythm functions of the heart and are the best at treating it. Understanding AF and it's treatments will help you to choose the best treatment plan for you.

    Now... Ian brought up "The Most Important" thing about AF. STROKE Risk...... This is the #1 danger with AF. During an attack the heart is not pumping correctly and allows blood to "Pool" (become stagnant) in the atria. Because the blood is not moving properly it can clot. When the attack is over and the blood begins to flow correctly again, that clot can be pushed out and cause a stroke. That is why he said you need to be on an anticoagulant. Studies show that 35% of those with AF, and who are not on an anticoagulant, Will have a stroke. That is a big number and is not something to overlook. Here is a link to AFAs stroke risk calculator: preventaf-strokecrisis.org/... .

    Again, Welcome to the forum and please ask any questions you have. We have all been exactly where you are and understand the fear and confusion that come with a diagnosis of AF.

    Tim

  • Thank you Tim for all advice & support you have given,

    I will be looking at info on everything to do with AF.

    A few years back when it started I actually thought it was normal, because the episodes would only last for minutes or half hour was the longest & it never made me feel really unwell.

    Now they more frequent and last hours.

    I will take on board all your advice & will be prepared when I see cardiologist.

    Thank you again :)

  • Your reply to this made me cry as I too have had the attacks exactly as you described from nowhere sitting on settee! I am glad I am replying to you as I want some advice please. Having suffered for many years and been recently diagnosed with AF I have been offered cryo-ablation and pathway? I am very scared but what I wanted to know if this works will my heart then stop racing? When I asked the question yesterday if my heart rate would get better I was told no if its high it will always be but maybe I misunderstood? Surey that is the point of having it done as it has reached over 200bpm and been in hsp twice in last month? Will having a glass of wine or stress after still make it high without the AF? I may be being a bit thick here but wanted advice please on abaltion. Also my EP has suggested coming off all meds straight away which is a bit scary also to me is this the norm? Appreciate any help you can offer please. Thanks

  • Hello Kirch

    Sorry that you're here but can't think of a better place to be for support and information . All of us have encountered AF'S sting from palpitations to a feeling of ungrounded fear to running several marathons all in the space of a few hours.....sometimes less. The more you read the less the fear .....so read everything you can . Ask your cardiologist about an anti coagulant ...so important to minimise risk of a stroke. I'm on one of the new drugs for that not Warfarin. but Rivaroxaban...

    Hope all the info you get from here will make you feel more in control as it's so easy to let AF be your boss.... they have helped me so much .

    Nikki

  • Hi nikki

    My Father is on that new Rivaroxaban he had a stroke last year, well it turns out he's actually had 2 strokes, they picked up on another one with ct scan he must of had a few years back.

    This site is really comforting and puts my mind at ease about the whole AF thing.

    Thank you for your comments & quick reply, much appreciated :)

  • Hi Krich, Welcome to the madhouse which is AF . It has been said that AF is a mongrel condition and since we are all different we all suffer in different ways but what both Ian and Tim have said is quite true.

    Until a few years ago AF was considered a benign nuisance and and many patients told to go off and put up with it but around 2007 the link with stroke became understood and now much more emphasis is placed on the control of it along with adequate anticoagulation for those at risk. AF increases stroke risk by five times over non AF people and whilst it won't kill you it has the potential to really mess up your life.

    Make sure that you get to see an Electrophysiologist, a cardiologist who specialises ion rhythm disorders. As Ian says Harefield in the same trust as Brompton Hospital where I was treated have some very good EPs.

    AFA main website have fact sheets on every subject of AF you can think of so get reading as knowledge is power and the more you can discuss intelligently with your specialists the better will be your outcome.

    My last comment may not be welcome but it is true that AF is a long journey. You have made the first steps and most importantly found with AFA and this forum a bloody good map so refer to it on any subject you need as somebody will have an opinion. answer or just plain understand you.

    BobD

  • Hi Krich,

    AF can be hereditary. My father and mother both had AF. However it's unlikely to have contributed to your brother's death from a cardiac arrest.

    However his heart problems may have an impact on you. Men can die early from a sudden heart attack, it's happened to one or two of my friends, who were very fit. It's caused by blocked arteries. The blocked arteries can cause AF as a warning sign. As this can be hereditary, it's very important you mention this to your consultant. You might need an angiogram to check the state of your heart.

    Let us know how you get on.

    Mark

  • I am new to this site but find the comments interesting. I had AF 3 years ago and suffered just about every debilitating symptom mentioned above. Fortunately, I found out about ablation to prevent AF occurring. (although I understand it can return ). It is now 2 years now since I had the procedure and I have, to date, remained free of AF and love having my life back. I have also bought a INR (Warfarin) monitor to check my INR at home. The machine costs £399 less the vat = £299 and I bought mine from Roche. The additional items are available on prescription, but quite cheap even if you bought them yourself. This means that I no longer have to spend time going to have my INR checked at the clinic and just report in to the clinic every 6 months. If I experience any difficulties or need advice I can contact a specialist nurse for advice. I had considered the new alternative drug for warfarin, details of its use to date are contradictory. Some rate it highly, others say the mortality rate is higher than people who use warfarin. The reason I did not chose this drug was because I did not believe it had been tested long enough and if you do have a problem there is no antidote to correct your INR unlike warfarin. Wishing everyone all the best. Beano jones.

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