Have been a member of this forum for six months or so but this is my first post.
I've got an ICD fitted because I have Brugada Syndrome (Google it - it’s scary), but have also been ‘missing’ heartbeats periodically for a couple of years which my consultant says is AF. I have been on no medications until now. On Sunday though I had a severe bout of AF, so got the wife to drive me to A&E as it showed no signs of decreasing after 9hours. Heart felt like a box of frogs, beating randomly – quick, slow, quick quick, slow and at varying strengths.
First checks they did were blood pressure, heart rate and oxygen levels. M/c said heart rate was a regular 75bpm. Nurse asked if I ‘thought’ I was still in AF – I said I was and suggested she checked my pulse manually as it would be all over the place. She did so and came up with a rate of 84bpm but that it was very erratic. Eventually got an ECG done but unfortunately as soon as I took my jumper and shirt off for the stickers, the AF stopped (do you think this could this have been due to temperature change?). Naturally the ECG was perfectly normal, so they seemed rather sceptical. They did decide though to keep me in on a 24hr monitor to see if it picked anything up. Of course it didn’t, but the next step was to interrogate my ICD to see if it had recorded anything. Fortunately it had found 10 ‘incidents’ at just after 5pm on the Sunday and had recorded just one ECG, which showed AF with my heart rate at 220bpm in a couple of places (my ICD starts to think about giving me a shock at 230bpm).
Anyway, now to the reason for this post – my consultant’s decision (communicated to me via a junior doctor) was to prescribe one tablet of 2.5mg Bisoprolol and one of 75mg of Aspirin daily. I was horrified by the aspirin and told her so. Her reply was that I was at a low risk of stroke, and aspirin is what the latest European guidelines suggest. I disputed this but she said she could not override the consultants decision anyway (he had gone home by then). I told her that I could!
Any suggestions on how I go about convincing the consultant (or maybe my GP) to prescribe a safer alternative?
The latest NICE recommendations (draft out last month) can be found here: nice.org.uk/nicemedia/live/... Pages 15&16 don’t even mention aspirin, but I must admit that as yet I haven’t read the whole thing.
Cyril.
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cyrilbarnes
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Hi, I have noted down the relevant pages. Page 16 or 59 1.5.1 - Offer anticoagulation to people with a Chad Score of 2 or obove (new 2014) Also Page 19 or 59 1.5.13 - Do not offer aspirin solely for stroke prevention (new 2014)
There is also an article dated January 28 2014 from European Society of Cardiology Title Aspirin still overprescribed for stroke prevention in atrial fibrillation. Published in Science Daily. Should be able to find it on line.Written by Professor Gregory Y. H. Lip he is a lead author of the ESC.
Greg Lip is a super bloke and the most experienced person I know regarding warfarin and stroke in AF I have listened to him and discussed this subject on several occasions so I know who I would believe. Sadly many cardiologists are still way behind current thinking. On one occasion as a patient representative at one of Professor Lip's presentations various doctors tried to tell him that patients didn't like taking warfarin but I was able to contradict them and point out that it was actually doctors who didn't like prescribing it fearing internal bleeding even though this was extremely rare.
All that said, if your CHADS2 score is nil then you may well be at low risk but check that against Chads2Vasc2 score to be sure. If you really are low risk then aspirin can actually do more harm than good as IT can cause stomach bleeding and since it does nothing for stroke prevention in AF it is actually of net damage. It reminds me of that advert years ago "Nothing acts faster than Anadin" -- so take nothing. lol
You have AF - therefore you are at serious risk of stroke. Ask for a new cardiologist as that one is broken.
There is a simple way around this nonsense. Go to A&E and tell them you have just experienced blurred vision and difficulty raising your arms above your head. They'll be really pleased you've paid attention to the FAST campaign adverts. Tell them you have AF and though you feel perfectly ok now, it scared you. They'll run some tests but you will be promptly diagnosed as having had a TIA. Your CHADS score will leap up, and hey presto - welcome to the Warfarin Club.
So, it's a white lie....your life is what's important here! You're only rehearsing a likely real event...
David is right. A daily tiddly aspirin upset my stomach badly.i had always taken aspirin successfully for migraine but a daily onslaught upset me. My neighbour suffered gastric bleeding. And they're not effective either. No problems with warfarin.
Actually Jenny I am now told that Warfarin is old hat. Bloods have to be regularly checked and my understanding is that you have to be very constant with alcohol intake. I therefore resisted it and have been put on 2* daily Apixaban from which so far (4 months) no side effects.
Warfarin may be "old hat" in terms of technology but it is a tried, tested cheap and proved anti-coagulant with an immediate reversal agent available.
On the other hand Apixaban, along with the others new anti-coagulants (NOACs) has no immediate reversal agent (although a much shorter half life) and perhaps more importantly for doctors is much much more expensive, so much so that many will not prescribe it unless there are contra-indications to warfarin.
Yes you have to be very slightly more careful with diet and warfarin, and there are blood tests also neither of which is necessary for the NOACs, however as I said many GPs will simply refuse to prescribe them probably due to cost, but also due to fears about reversal.
I am very happy for anyone who is on any of the NOACs, my personal view is that warfarin is fine for me and I don't mind the blood tests, it is of course a personal decision but many GPs will make that decision for their patients.
I agree with Leelac. This was my plan but when I got to the hospital I actually had a serious bout of af. Was kept in for about 8 hours and left there with warfarin!! Good luck.
I agree with Leelac as well. If you have an arrhythmia, then you are at a higher stroke risk, therefore you need proper anti-coag's. I have a Chads score of zero and my EP has put me on Warfarin and if you had what I had you would know it would be ridiculous and dangerous not to do so. I personally think Chads should be ignored when it comes to arrhythmias.
Obviously, if you get a stroke then your Chad's will go up and you will then qualify for anti-coags, but surely it's better to not have the stroke in the first place !!!
By virtue of being a member of this forum I knew years ago that I needed to be on warfarin. My Chads2 Vasc score was 4, but neither my gp nor my consultant were impressed, though I showed them charts and figures. My consultant actually said, re. age, (then 70) you're very fit: re. high bp, that's being controlled,: re. diabetes, that's being controlled and re. being female, not really important. However, I banged on about it and was finally prescribed warfarin. I breathed a sigh of relief and got on with things. I'm now having a similar situation about flecainide, which I know works for me when taken regularly. I was allowed to take it for a month to stop af at the time of my son's wedding. Two gp's have said they don't want to prescribe it, it's not their drug of choice, but another one said she would be happy to prescribe, but she's not my gp. Is it true that only a consultant can prescribe it? BTW does anyone know if there is a drug which specifically targets ectopics? I might start agitating for that now, keep them on their toes! lol
Jan, I think you're right as my GP told me that she is not allowed to prescribe rhythm control drugs. She can prescribe beta-blockers though but that's not what I need at all. My EP prescribes my rhythm control drugs and the GP is doing the admin in effect.
For goodness sake - fight for yourself, you have AF!! Two years ago I was weaned off Asprin and Amiodarone, 4months later had aTIA. Now back on Amiodarone and Pradaxa.
Jan, I have been on flecainide 100 mg twice a day for 3 years ( I'm nearly 70)
My GP calls it "a dirty drug" - it was prescribed by consultant initially. I think it either suits you or it doesn't and I'm very pleased that it suits me just fine. So annoying that you have to fight your corner for things though.
I'm pretty sure everyone gets ectopics it's just that we with Afib are more aware of them. Keep plugging away.
Wow! I've posted on other sites before, both to do with health and other things, but have never had such a cavalcade of answers if any at all – you must be a very caring bunch, thank you so much.
To date I have made an appointment with my GP so that I can see what he advises - I shall be taking info given to me by the AFA and also a copy of the new NICE guidelines on AF management, that are only at the consultation stage at the moment. Unfortunately I can’t actually see him until 12th March as he is so popular; I could have seen a junior partner sooner but felt it was better to wait and see the senior man. I have no idea what his views are, or even if he knows a great deal about arrhythmias as I hadn’t been diagnosed with heart problems (which was 4 years ago next week) when I last saw him. I can’t even remember when I did see him last as I very rarely have the need to visit the surgery. Even now with Brugada and AF I just go to regular 6 monthly check ups at the cardiology outpatient department of the local hospital. I assume my GP is being kept up to date on my conditions by the hospital. Will let you know the outcome in due course, but obviously not for a couple of weeks. In the meantime I will still read all the posts on here and possibly stick my oar in if I feel I can help anyone else, now that I have broken the ice.
Hi Cyril and welcome, can you tell me about your Brugarda, syndrome, how it was diagnosed etc. I was diagnosed with AF last spring and in August prescribed Flecanide, by October it was discontinued ( shame as it was effective) because my ECG showed a Brugarda pattern. I was told it could be a false reading caused by the drug, hence the withdrawal, I'm now due to have an Ajamaline challenge on Friday. I asked questions on this site a few months ago, but no one seemed to have any experience of Brugarda. Any information re; your diagnosis would be helpful, and your right it is scary, especially the genetic link. Many thanks, Chris
Well done to your Dr/Cardiologist for recognising the Brugada pattern in your ECG and stopping the Flecainide. I imagine that the Ajmaline challenge will show up the same thing, as Flecainide is often used instead of Ajmaline to carry out the test (I believe Flecainide is cheaper!). The test itself is absolutely nothing to worry about, they will have a 'crash tender' to hand just in case there are complications but it is very rarely needed - all my relatives were tested with no ill effects (including my brother who has other heart problems anyway). I was told that I may feel as if I am wetting myself during the test, but not to worry as I wouldn't really be doing it - I actually had no such feeling.
I was diagnosed with Brugada after blacking out whilst driving on the M4 motorway near Bristol. If you look at my profile on this forum I have written a little more about me, and there is an extended version on the Arrhythmia Alliance forum under the posts headed ‘could you share your experience’. Both versions are very much shortened but I do have a full version on my laptop just in case it might be useful one day. Even though I blacked out (couldn’t see etc. and was slipping into total unconsciousness) I can still vividly remember everything that happened and what I was thinking and doing at the time. Normally with a Brugada attack, or any sudden cardiac arrest, the whole incident is wiped from ones memory.
Let us know how the challenge goes and what the experts decide to do if anything. If you are asymptomatic, it may be that they will just keep an eye on you in the future. There is no cure for Brugada and unfortunately not even a drug to keep it under control as yet. Isoprenaline and quinidine have been used to treat the symptoms but their effectiveness as preventive drugs is open to debate. As far as I know, having an ICD fitted is the only effective measure available at the moment. Having AF may just push them into suggesting an ICD for you, as it is possible for AF to up the ventricular heart rate high enough to be a danger to anyone with Brugada. I went to A&E a fortnight ago with a sustained bout of AF and found that my ICD had recorded ventricular rates as high as 220 bpm – a little further and the ICD would have been giving me ‘therapy’ i.e. a shock to stop it getting out of control!
Best wishes for Friday, and don’t forget to have someone with you who can drive you back home!
Thanks for that, will let you know how I get on, I'm a bit confused about the driving bit. My appointment letter stated you can drive yourself and you can't drive yourself both on different parts of the letter and when I asked the rhymn nurse last week she said I could drive myself ???,
I am looking forward to your report on your visit to the GP because the reason I found this site was that I was a bit concerned about my treatment - I was diagnosed with PAF years ago and take a small dose of Arythmol every day, but the Cardiologist said I need not take Aspirin as it does not suit me, while my GP was very insistent that I should! I have had a few slightly worrying symptoms lately so I thought I'd see my new GP. I wanted to be armed with a little more info than I had before. Warfarin did not suit me because my INR readings varied wildly in spite of my best efforts but I would be willing to have another go.
Saw my GP today, armed with various bits of information relating to Aspirin not being effective against stroke for those of us with AF, and was pleased to find that he totally agreed with me. Told him that I wasn't happy taking aspirin as all the info I had said that it shouldn't be prescribed for AF patients. He replied 'so you want to have warfarin instead?'. I said I just wanted something that would do the job properly and that warfarin or one of the new drugs would be ok, but I would be happy to settle for warfarin even though it is more hassle in the short term. I start the warfarin at 6pm tomorrow! Job done.
Will let you know how I get on. Incidentally he has three families on his books with Brugada syndrome, which is obviously more than his fair share seeing how 'rare' it is supposed to be. Can't blame it on the area, as I am an outsider, and the latest one has only just moved here from France. At least he must know a bit about it by now though.
Thank you for your reply, very encouraging! I seem to have inherited a tendency to AF from my father's side of the family and have just realised it probably accounts for some of the strokes suffered. I have not met my new GP yet (my previous one cut his hours) and I am a little nervous about arriving for the first time armed with info from the Internet but here goes!
please go back and insist about taking an anticoagulant .... it really does keep you far far safer from a stroke; truly is a * must take med *. Stamp your foot if necessary .
Thanks for your concern. It's all sorted now - saw GP two days ago and he put me straight on warfarin. 5mg daily at 6pm! First visit to INR clinic on Monday, when they will give me all the spiel and probably vary the tablet strength. Must remember to ask about self monitoring, as it seems the sensible way to go.
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