Not Happy!

I had my first episode of A fib 20 months ago after drinking coffee by mistake ( I am excessively sensitive to caffeine). It was cardioverted successfully. I havent been taking anticoagulants but now understand I probably should. (I have been waiting for the next episode to convince me that it is a problem.) I started talkng Eliquis but it gave me a bad headache within 12 hours so that was stopped.

I hate the thought of a stroke but I also hate the thought of a bleed.

Is there anywhere to get information about the relative benefits of warfarin compared with NOACS? I am about to start Xarelto but am not really happy about it.

What a bind! Is there anyone out there who can give me some reassurance?

I am a 68 yr old retired paramedic so I have seen a far bit of the A and E.

23 Replies

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  • Page 7 of the uk NICE guidance lays out the differences nicely

    nice.org.uk/guidance/cg180/...

    I think most of us using this site are taking an anticoagulant.

  • Thank you very much goldfish, that's exactly what I wanted. My EP/cardiologist has been quite unhelpful, just expects me to do what I am told, no questions, it's awful.

    He scared me with "silent AF", I was thinking I was OK. knowing how to check my pulse rate frequently.

    I'm quite anxious about it all just now. Dont normally take any meds.

  • If by silent AF the consultant means that you have an AF attack without realising it then he is correct. People can have both symptomatic AF incidents and asymptomatic incidents. Asymptomatic incidents can happen in your sleep or if you are awake. Symptomatic incidents can occur in your sleep without waking you up.

    There are quite a few people on here who have had a holter monitor for anything from 24 hours to 30 days who have been very surprised because they had far more AF incidents than they were aware of.

  • I wouldn't count anything as AF unless it went on for several minutes but I have learnt that you can have lots of very short runs of AF, seconds really, which you might never notice and they can be as dangerous as one prolonged episode - I hope I've got that right, if not the Nondiplomatic Cor can have a go!

  • Love the last comment!!!

    You could actually have a non symptomatic event for many minutes, even hours, without a noticeable elevation in HR. Even if the HR went up 20% many people might not notice.

  • Hi there expences. If you scroll down to dizzielizzie1's post today 'nervous about taking Rivaroxaban' which has an orange Popular flag on it, you'll find quite a lot of comment.

    I would have described myself as incandescent about taking anticoagulation, not merely 'not happy' and initially I found it very difficult and simmered for some months. But that was then and my tune has changed.

  • Thanks for that. It is quite a surprise how common these feelings are. My cardiologists did not even acknowledge this side of things.

    Actually I was VERY angry when I was told just a week ago, after the same guy had told me a year or so ago that I could take an anticoagulat if I had anther episode.

    This time I'm told I have to take them but nothing has changed as far as I am concerned.Then getting such a headache and tinnitus on eliquis , I went back to talk about but he was quite dismissal. So i was pretty upset and told him so.

    I do have quite a good understanding and anatomy and physiology so I had a lot of questions. Very cheesed off.

  • It isn't easy to have peace of mind when you fly in the face of medical opinion. I found the impact of anticoagulation enormous and I resented everything about it. I refused to take it initially and eventually capitulated when my heart let me down once too often. It plunged me into a very unhappy state, convinced that I would be one of the few for whom it would turn out to be a bad idea. Dark days. While I felt damned for embracing anticoagulation, for I would soon bleed to death, I was also damned if I didn't because I would have a stroke - and have egg on my face (that I'd be unable to wipe away) for not following advice. I felt the former was the better of the two. It felt like taking poison and I found everything threatening - and all for something that happened just once in a while. I had had a dodgy heartbeat occasionally for almost 20 years.

    Apart from my very supportive other half, I don't think anyone understood the misery, anger, resentment, frustration and general incandescence of the situation.

  • I think I would also be cheesed off having experienced that attitude! Lots of info on the AFA site.

    Everyone reacts differently to each med and finding the one that works for you is often trial and error.

    I have been AF free for over 2 years after ablation and came off AGs because I hate taking any meds, however, I soon went back on them as soon as I had AF episode in September in fact my first horror thought was - ahhh, I need to be anti-coagulated NOW!

    I think it is common for anyone who has worked in emergency medicine to be even more wary as you will have seen some extremes.

    It is always a benefit v risk assessment so CHADSVASC score v HASBLED is worth doing - link on the AFA site.

    Rellim's experience is very common, I think we all had initial thoughts that we didn't want AGs but when you read the stats re AF stroke - you tend to reconsider.

  • I've had a good read of the NICE options booklet, the evaluation sheet is very helpful and I completely understand the logic.

    I do find the whole business immensely frustrating. Because I am female and over 65 I get a score of 2 . Not sure about my BP. It was always great but a lot of stress and cortisol seems to have pushed it up so now I am a 3. The thing is... in the research there are no stats about the people who had strokes, ie AF how often, general health, why 1 pt for being female, etc.? And looking at the charts .. a lot of people didn't have a stoke and and would not have done anyway(?) and some still had one on anticoagulants! Also no evidence of the severity of the stroke.

    I just wish there was some research somewhere to show the cause, the treatment is basically just managing the problem.

    Guess I am still cranky! ;) Just not used to be a patient!!

  • Some of the stats are out there.

    60% of all fatal and major strokes are had by AF sufferers.

    Being on Anticoagulant reduces the risk of a clot but the risk is still higher than that of a normal person.

    It was studies which showed that females were at a higher risk hence the point.

    As was pointed out to me some studies / research is not carried out because the medical profession won't play Russian roulette with people's lives. Imagine carrying out a trial where hundreds of patients with a chadsvac score of 3 or 4 were given a placebo (ie not anticoagulated) just to try and prove a point. I would refuse to go on to hat type of trial study. With the internet it might be possible to conjure up a number who refused or couldn't to take an anticoagulant but would there be sufficient for a meaningful study?

  • True.

  • Hey there expences ............ calm down and settle down !! you got this thing, get used to it and work your life around it. When I was diagnosed at 65 in Jan 2010 (wow! 7 years in January), I just had no idea what was what - couldn't even spell AF, much less know what it was. Anticoagulated straight away with Warfarin - now, I am so fortunate - I took to it like I take to red wine - unbelievable. I have a brilliant and totally supportive GP surgery, I bought my own Coaguchek XS INR testing device and monitor my own INR and sometimes I tweak my own Warfarin doses. Tut! Tut! I hear you say.

    When I first went on Warfarin I bruised so easily, anyone just touch me let alone give me a mugging and I'd be black and blue for ages.... weeks. Nowadays I hardly bruise at all, if ever. I do have to be careful of DIY tasks where there is the risk of cutting or otherwise mutilating myself and keep a range of 'Band aid' close at hand. When I'm working I keep a small First aid kit ( with the same range of 'Band aid') in my work bag - just in case. I also subscribe to Medic Alert in the event I'm found unconscious and wear a dog tag with all my medical ID stuff on me.

    I am totally in control of my life, sod the AF. I manage my life. I found originally I was looking for a cause. I went bloody stir crazy seeing if I could find a cause. I can pin point about 3. After some 4 to 6 months I found food triggered an AF event - I identified this with a dysfunctional vagal nerve. I went to a nutritionist who helped me with a food intake programme and I have had no recorded AF event since April 2015.

    Since I have been on Warfarin I have twice had to come off it once for a CT Scan with no bridging anticoagulant, and once when I had a partial knee replacement with a bridging anticoagulant (Fragmin) ........... no worries on both counts ! On both occasions I kept statistics (I'm like that - a boring bugger) and on both counts it took me 29 days from when I stopped warfarin to when I return to therapeutic range. And hey ! I survived and am complete with a new knee !!!

    Also I suggest (if you haven't already done so) you visit the Atrial Fibrillation Association Website (AFA) and see if they have statistics etc for you to read up on.

    I my view so much about AF is about the speed and accuracy of initial diagnosis, the ability, the willingness of the patient to take control of the condition, manage the condition and reorganise their life. Do this thoroughly and do it well and you'll live a fulfilling life, carry on being angry and cranky and I fear you'll end up in a dark place where you really don't wanna be !

    I'm now 72, I still work 30 to 40 hours a week, driving a bus in the tourist industry which also involves lifting passengers baggage - most of it over 15 kgs, I've lost some weight, but not a lot and I now manage my food. In my spare time I often get out on the Cornish South West coastal path and the other day walked down to a beach and then climb a tortuous rugged, rocky path up to the top of 500 ft high cliffs. No problems - with heart - or knee ! I also travel, mostly to Sydney, Australia - no worries sport, a walk in the park.

    May the force be with you.

    John

  • Great to read your reply John, thank you so much. I think you have great story to tell.

    My story is that I started having episodes of Tachycardia and high BP out of the blue in 2010. Went to hospital each time until one time in A&E, I went into a rhythm called bigeminy (where every second beat is abnormal). They sent me to CCU and I had an angiogram but nothing was found. Was never in AF and had plenty of ECGs.

    The very next week, was talking to a friend who suggested her husband had a similar experience and it was caused by caffeine. So... I went onto decaf and the problem stopped completely. Fast forward a few years, we bought a Nespresso machine and one day my husband got our cups mixed up and I got two cups of the real stuff. That evening I felt sooo tired, went to bed and woke up at 5am with a pounding chest.and pee-ed bucket loads, so much that I lost a Kg of weight in 24 hrs. I knew it was AF because I am a retired paramedic.

    Went to hospital and had to come back the next morning for cardioversion. Overnight , went from AF to A flutter!

    Anyway, the CV worked instantly and no problem since. That was Feb 2015. Cardiologist prescribed anticogulants but i was convinced it was caffeine induced and didnt take them. Went for a second opinion and he accepted my story but 12 months later changed his mind. So it was a shock and now I am trying to come to terms with it.

    I am doing things like losing weight and eating much less processed food, I definitely dont want it back if it is caused by something else.

    Dont have a lot of confidence in doctors either after seiing many a medical stuff up in my career. Thats part of the trouble.

    Thanks again for your very commonsense approach, this forum has really helped me a lot. I have done so much reading.

    Talking to friend today who has just been diagnosed with myeloma made me grateful to only have AF!

    PS I live in beautiful Perth in Western Australia, you should see it sometime.

    Warm regards, Brenda

  • Hiya Brenda,

    I lived for over 30 years in Sydney and also had 2 years in Melbourne and a year in Canberra, so I'm more Aussie than I am a Pom ! Have been to Perth many times and I can never forget the view from Kings Park looking out over the Narrows Road Bridge and the Swan River ............. so beautiful. You are so lucky. My first trip to Perth was on the inaugural journey of the very first 'Indian-Pacific' on the opening of the standard gauge railway in about 1970 (I think) - was young and immortal in those days :-) Lol!

    Sorry about your friends diagnosis, my partner many years ago had that. A demanding and sad journey for all concerned.

    I am now gluten free, wheat free, processed foods free and all added sugar free - mercifully I can still drink alcohol, but only certain types of lager, Peroni and Tiger beer, G & T and also wine (Red wine from Margaret River is a bloody ripper !!). Have you heard or read of the FODMAPS diet. It originated from a nutritionist in Box Hill, Melbourne, Vic but if you Google it you'll get shedloads of info on it - maybe of some interest to you.

    I do understand how your career has influenced your feelings and attitude. My initial feelings were how can I bloody well have a heart condition when I've been so bloody fit all my life, don't make sense !! But that started years of reading and learning end result ........ discovered my paternal grandfather died from a series of strokes in 1964 - cause of strokes unknown - query AF ??, my paternal 2nd cousin had AF (his grandfather (don't know cause of his death) and my grandfather were brothers), my daughter had AF diagnosed during 2 pregnancies in her late 20's/early thirties !, So genetics comes into it, then I realised I carried my mobile phone in my shirt pocket for a couple of years whenever I was working (roughly over my heart - read up on electrosensitivity), then came 2 years or so of palpitations but successive ECG's failed to pick up anything during this time ........... then it was jackpot time and AF hit me. It is also acknowledged quite widely that a person may also have a predisposition to AF. So it may well be possible for a person to have a genetic predisposition to AF, much as some families have a hereditary tendency to whatever medical conditions may have occurred in that family.

    Finally, when I went into A & E they kept me in for some 6 days doing all manner of tests. They did an Echo and found my left atria was damaged (it will never heal) I forget the details now but this damage will most likely result in blood pooling and can be the trigger/cause of a stroke. So for me being on Warfarin is a 'no brainer'. Otherwise I'm a walking time bomb.

    Have you yet had an Echo done?

    Brenda, apologies for the rambling post. Hope you enjoy these thoughts.

    John

  • Just a footnote to my first reply , after the episodes of Sinus Tachy, my GP decided it was panic attacks and put me on betablockers and antidepressants! Fortunely that only lasted a week.

  • I think many of us have experienced your reluctance to submit to long term medication. Silent AF does happen and AFlutter is stroke related too. I've been taking Apixaban for 3 years without side effects, so it may be a matter of trial and error in your case to find an AC which suits.

    Anything might be better than a debilitating stroke.

    Best wishes

  • Thank you very much for your replies. I guess I am in denial really , I just find it hard to accept that one episode results in a lifelong diagnosis. I wonder how much dehydration is a factor.. it certainly appears that way for me and I thought I could control that.

    What a great website this is, I was feeling very anxious and lonely.

  • Dehydration is certainly a factor for me too and as one poster wisely wrote 'if you are thirsty then you are dehydrated'. It is recommended that we drink at least 2 litres of water a day in addition to tea/coffee.

    Have you looked at the main AFA website where there is a wealth of info on all aspects of AF, therapies and drugs and some excellent booklets which you can download?

    Denial and anxiety describe my feelings exactly after diagnosis - knowledge, advice and finding that others can cope with the same condition and live normal lives helped me enormously.

  • Thanks, I will.

  • This video may be helpful, hope I've got the right one...

    I was put on Apixaban because it had the lowest bleed risk for me, my EP said.

    _

  • Thanks Koll, its the thought of taking a NOAC "just in case" that's hard to swallow.

  • Last word, I am nearly 72 and if I could be sure that any stroke I had would be fatal immediately I wouldn't take Rivaroxaban. As I can't, I do.

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