I am new to this site and find it very informative and reassuring

I started getting a rapid heartbeat about 5/6 years ago. This began when my mother was diagnosed with cancer. Eventually I was referred to a cardiologist. An ECG revealed nothing. I then had a 24hour/7 day monitor. This revealed paroxysmal AF. Sotalol was prescribed and Warfarin. I didn't like the idea of Warfarin and had been told that there were other anti coagulants. The cardiologist prescribed another anti coagulant and sent a letter to my GP in this regard saying that Aspirin was not enough. The GP wouldn't give this to me because the Primary Care Trust insisted on taking Warfarin first. I told the doctor that I didn't want Warfarin and asked should I just continue to take Aspirin and the GP said "Yes". This was July 2012 and I had a big stroke in May 2013! I have recovered fairly well but my mobility is not good, my face still feels 'funny' and my throat is still partially affected. I still have the PAF for which I take Sotalol and Digoxin. I also take a low dose of Bendroflumethiazide for blood pressure and statins to keep my cholesterol low, although it has never been very high. I now take Warfarin, which I finally chose as it has a simple antidote in the case of excessive bleeding, vitamin K

I often get dizzy and breathless and very tired. my blood pressure seems to go low when my pulse is high. I have assumed that the pulse is irregular when the pulse is high but am not quite sure. I was referred to a cardiologist about a year ago but have never been called for an appointment. Up until now I have been concentrating on improving my post stroke fitness but I now want to find out more about treating my AF because the symptoms interfere with exercise and general feeling of wellbeing

13 Replies

  • Welcome and sorry to hear your bad news, even though it was from a few years ago.

    You need to chase up the appointment because you have to be seen within 17 weeks of a referral. At a year that is 35 weeks late or treble the time. Somewhere a letter has gone astray.

    Really the vitamin k aspect as an antidote is a non issue. Yes it is an antidote but it can take a long time to bring down the INR in my case over 36 hours. For instance one of the NOACs (Apixaban) would have been very well out of the system sooner than warfarin (and at tge time my INR was only 2.2 but my therapeutic range is 2.5 to 3.5 and normally mine is over 3.0.

    I am not sure if you are wanting to address / challenge the past events because there are issues there.

  • Is everything 17 weeks in your area? In 2011 when I queried 18 weeks with a cardiologist he said that it had been suspended 'for the moment'

    It was five weeks for my initial appointment, seventeen weeks for a stress echocardiogram (and I got a cancellation). Ten weeks for an angiogram and then seven moths for aortic valve replacement.

    Last year I waited five months for an orthopaedic appointment and six months for a neurology one. I was then referred to a neuro surgeon and after eight weeks on the list was told that it was a 39 week wait. At that point I went to see one privately.

  • Yes as far as I am aware.

  • When I questioned the stroke consultant who had referred me to a cardiologist his reply was that they (the department he referred me to) couldn't think that my case was very serious! I mentioned it to the GP and he didn't comment

  • No I don't want to challenge past events although my husband was very angry about it when I had the stroke and wrote an angry letter but he hadn't realised what was going on at the time that they refused the other drug. I was being wilful and didn't understand the gravity of the situation. I thought that as I had occasional PAF that it wasn't as serious as AF and I knew a few people who were doing very well on Aspirin

  • Hello joycalpat. You don't have a happy story to tell, but you have come to the right place because the forum is full of useful information and support and will help you to move forwards. Things change all the time and the number of warfarin users seems to be decreasing at the moment with many moving to the newer anticoagulants. Warfarin was certainly the first choice in 2012 when many felt the new ones were not proven and it was a brave step to be considering them. My GP surgery did not recommend them three years ago but they do now.

    Are you in the UK or elsewhere?

    There may be several ways that your situation could be improved and with AF it is best to be referred to a cardiologist whose speciality is the heart's electrical activity.

  • Thanks for your kind reply. Yes I do feel that this is the right site to get information. I am in the UK. At times I have wondered if my symptoms were due to the stroke or anxiety but I think it has to be due to the AF. I will try again to be referred to a cardiologist.

  • Sadly you are one of many who have been let down by the system in this way. Your original cardiologist was quite right but it seems that your GP let you down badly. That you survived an AF related stroke and are making a reasonable recovery is wonderful and must be a lesson for any other members who may worry about anticoagulation.

    Peter is quite right regarding the vit K thing which is a bit of a red herring really. I have been on warfarin for eleven years now and often cut myself working with machinery and never had to even go to hospital.

    Once you feel stronger you need to ask your doctor to refer you to an electrophysiologist who is a cardiologist with special interest in the electrical system of the heart. These people are teh experts in arrhythmias and best placed to instigate a treatment plan.

    Ask any questions here and we will try to help but please go to AF Association main website and read all you can as knowledge is power.

  • Thank you so much for your interest and help. I am learning a lot

  • Hi joycalpat,

    I'm very sorry to read of your unfortunate experience and I wish you every success in your post stroke fitness. with your positive outlook I'm sure you'll be another success story. I use that phrase because I always think of the BBC's Andrew Marr who had a stoke and has made an outstanding recovery - so I do hope you achieve the same success.

    You mention a couple of things that struck a chord with me - going back to my early days of AF.

    The day AF struck was weird, I felt as if I had some sort of virus, like coming down with 'flu. I was diagnosed in Jan 2010 aged 65 by the way. In those days I already had a blood pressure issue and was being treated by medication, so, I had my own blood pressure monitor at home.

    Anyhow this day my 'flu' symptoms got worse so I took some blood pressure readings. They were ballistic varying from error messages galore to falling BP and rising heart rate. In those now distant days my average BP was around 136/85 by late afternoon this day it had fallen to 90/50 and I was certainly much worse for wear. Went to my GP, he sent me to A & E immediately and the rest is history. Heart rate peaked at 160 bpm.

    So within 9 hours of onset I had been diagnosed with paroxysmal AF AND treatment started.

    Prior to AF, my medication was - Ramipril 10 mg for high blood pressure, Simvastatin 40 mg - Cholesterol and Bendroflumethiazide ( can't remember dose or what it was for now). While under the Cardiac Consultant he changed my party bag of drugs - kept Ramipril and Simvastatin and took away the Bendroflumethiazide. He then added Warfarin and Bisoprolol. And since then, in more recent times my GP has added 2.5mg of Felodopine for blood pressure.

    I had initial problems with both Warfarin and Bisoprolol but over time things settled down and they are now my two best buddies. With Warfarin it was bruising and, when doing DIY jobs I might slice myself and bleed, but no great drama. With Bisoprolol it was random, sudden inexplicable nose bleeds. In this case my GP changed my Bisporolol doseage from morning to night time and everything was super ! I've had no trouble since. My INR readings are fine - I test myself on the prescribed dates and phone my INR through to my GP's INR Nurse and have no problem staying in range I also vary my own Warfarin doses when I need to according to a Medical Algorithm, again no problem.

    I've twice had to stop Warfarin for a short period - once for a CT Scan and the other a bit more demanding - partial knee replacement surgery. With the latter I was given a bridging anticoagulant then back to normal Warfarin . no problem. I also travel to Australia often and take my testing device with me, and I am still working driving a bus 30 to 40 hours a week and every year I pass my DVLA medical.

    The first 6 months following diagnosis of AF were the worst ever and life changing, but, once past those 6 months life gradually returned - almost - to normal. One thing I found in that time was that my AF seemed to be triggered by some food. I consulted a Nutritionist got some advice, followed it and this has helped in controlling things, to the point that my last recorded AF event was in April 2015.

    But I have to qualify all the above and stress that this was my own personal experience - probably not the normal in AF terms, but, certainly mine. And in making these comments I do so to give you some insight as to how vast the world of AF is and perhaps an idea of how difficult it is to comprehend. It seems to be all things to all people. I would also say my 32 year old daughter has been diagnosed with AF (following the birth of her two kids), my 2nd cousin has been diagnosed and treated for AF and my Grandfather died following a series of strokes in 1964 (all on the paternal side of the family). So now we chuck into the melting pot the concept of genetics.

    Hope all goes well for you - may the force be with you.


  • I feel angry on your behalf. I dont blame your husband for writing that letter. I didnt want to be on warfarin either but that was the decision of the cardiologist because I also had an aneurysm. That has since been coiled but Im still on warfarin. My stroke consultant is not open to me changing any medication. I am on 80mg Atorvastatin. I have never had an issue with cholesterol. It was under 5 when i had my stroke. it is now 2.8. I asked to come off such a high dose. He replied that I will need to take 80mg until 5 years post stroke. I am following his advice. This has nothing to do with cost as in my country we pay for all our own medications. Someday I hope I can change from warfarin because I real want to resume taking Krill oil as it really helped in my recovery from stroke. Unfortunately the medical profession dont explain illness very well. I had to do all my own research.

  • Thanks Jennifer. I am in the same position with statins. I wonder if I really need them and if it is good to have such a low cholesterol level. You are right, the medical profession don't seem to think that they need to explain things properly. Most of us taking Warfarin have other problems. I have osteoporosis and some arthritis. Vitamin K is important for the bones and so is exercise. I do think that a more holistic approach is needed when treating patients with Warfarin but in this country it is always a question of cost. Nevertheless if we can do some research ourselves it gives us knowledge and as somebody else commented to my post, knowledge gives power.

  • Thanks for the reply John. Well done for checking your INR yourself. I am thinking about this. My blood pressure does go very low at times when my pulse is high. I then don't take the Bendroflumethiazide for a bit and check my blood pressure later to see if the readings have changed. The Digoxin prescription has been halved recently and I only take Sotalol if the pulse is above 63. I am never really sure if the pulse is irregular or not. I think I will have to invest in another monitor. I am 76 and manage my medications well, which is just as well as I don't think my husband could deal with it. I had a carer for a couple of months after leaving the hospital for the stroke. I am now fairly independent and can enjoy family life and socialising although I do get very tired at times. We manage to go abroad for short holidays. It's always good to share experiences. Breathing exercises, a daily walk and getting interested in things plus a good laugh are things which seem to help me.

    Wishing you the best of health


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