AF Separation

Good morning all, just though I would throw one into the mix, I read sometimes on our site (notice I say 'our' as feel part of the AF family now !), that people often post about heart related conditions other than AF and discuss the types of medication they are on. This can sometimes confuse newer members (and old), in respect of how to look at treatment for their condition, I understand that with additional heart problems that certain drugs are required, but not all the time just for AF, maybe we should start having the title to our posts to explain that we are going to discuss 'other' conditions not just AF. I think this would help put the minds at rest of folks who discover that they have AF and then read on here that they must immediately see their GP and demand, Warfarin, Bisoprolol, Statins, etc, etc. I often read posts on here that give me great concern regarding my own condition, only to discover when reaching the end that AF is only a small part of what the person actually has.?

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  • I don't understand your point. The medication I am taking is as you described I.e. Bisoprolol, Warfarin and Statins. I have no other heart condition except AF .All the meds you have listed are necessary for that condition.

    Bisoprolol -helps to stop the heart rate getting to high

    Warfarin -helps as an anti-coagulant for the blood to control stroke very necessary for all to check with their G.P. as soon as possible (I was't taking Warfarin and had a stroke as a consequence )

    Statins - helps to lower cholesterol

    It was only after finding this site that all the information that everything made sense .It doesn't matter if other related conditions are discussed at the same time ,because it is bound to strike a cord with at least another member somewhere and be a help to them.

    Fi

  • Those drugs only apply dependent on your risk score. Obviously yours was very high

  • No. It wasn't .Score of 1 for being a female. So I'm not scaremongering but want everyone to be aware of the stroke risk.

  • Hi I'm under 55 with a score of 0. The nurses at the QE refer to it as a little flutter !

  • Agree with feejbee and would add that there may be a "chicken and egg" situation in some cases. I have a congenital heart condition, now rectified by surgery. I had AF many years before the surgery and was successfully treated with medication. Nobody is really sure whether the structural abnormality of the heart contributed to the AF in the first place or is an independent factor. I doubt if there are two people in this Forum with exactly the same set of conditions, symptoms, medications or treatment history.

    Would it be useful to have a poll steve60 to see how many people in this Forum have been diagnosed with heart conditions other than AF?

  • I had a score of 0 ( 55 ,no other problems, very fit and active ) I wasn't even given a score of 1 for being female for some reason. Then I had 3 T.I.As and suddenly my score was 3! Now on warfarin, cholesterol lowering drug, bisoprolol and flecanide but still no other heart or health problems . I think part of the problem is that some of the drugs double up for other problems such as beta blockers to slow heart rate and also to lower blood pressure. I am happy for everyone to talk about all problems on here as so many are inter related and it does us good to talk and keep an open mind about things. However I do agree that when you are in the early stages of A.F. it is often worrying to read about others whose A. F. Has developed over years. I have learned that even if A.F. gets worse as it usually does there is always a way to treat the symptoms as they develop. You don't have to put up with things if you get a good E.P. . I think I may have rambled so hope it makes some sense.x

  • Partly agree but having had AF for 6 yrs with only asprin as my drug we do tend to enter panic mode a little to quick. Also health professionals refer to tia's as moments of absence so not sure why you were prescribed a suite of drugs as a result

  • Hi Steve

    I think we all know your position regarding AF and aspirin, and that's fine although I do disagree with you, and I also think the new NICE guidelines which are due out soon will potentially demand that your doctor re-visits that decision, at least I hope so because I don't want anyone to have a stroke due to AF.

    But I do have to take you to task describing a TIA as a "moment of absence"

    It's a stroke, just a short one that does not cause a lack of oxygenated blood to the body part long enough to necessarily cause permanent damage, but it can still cause a lot of damage, and it most certainly is serious and needs treatment and probably ongoing anti coagulation.

    It's most certainly not a "moment of absence" It needs IMMEDIATE medical treatment, and that should be by calling 999, it's a VERY serious potential indicator of a future stroke.

    Let's ALL remember Face Arms Speech Telephone 999 FAST.

    Be well and good luck

    Ian

  • Well said Ian.

    Fi

  • Good man Ian. TIA is a small stroke and scores 2 on Chads so demands anticoagulant. What about the Steve who had a stroke last week. and SRM GRandma;s friend. Russian roulette in my mind.

    Bob

  • moment of absence,steve?community health are coming this week to fit railings around the house,and apparently i was married once before,and the left eye sees what it sees from the right.dont know why this is all going on i only have a/f!!

  • For those who have not read it yet, Steve's (Makeawish) post of 5 days ago was probably one of the most salutary tales I have ever read on this site.

    The link is here

    healthunlocked.com/afassoci...

    Thank you Steve for sharing it, and please ANYONE who has AF and thinks that aspirin is keeping them safe, please read Steve's story.

  • Yes Ian , I second this as vital reading. I read and reread Steve's post and his situation was truly awful. Sandra

  • In my moment of absence I lost my speech and co ordination. Only lasted 5 mins but very frightening.x

  • Steve I attended a Stroke clinicians day in Surrey a few years ago and heard an eminent Stroke specialist telling colleagues that TIA's should be taken much more seriously as they are a sign of full blown strokes to come if proper action isn't taken..

    I also think your reference to asprin is unwise- it's fine if you want to run risks, although I would hate you to have a stroke, but those new to AF, who are understandably concerned about anti-coagulation, may take this to be safe advice and it most certainly is not safe!

  • What I have not seen mentioned is that a series of TIAs can lead to dementia and I personally fear that as much as a full blown stroke, don't fancy being permanently 'absent'.

  • Hi You have had AF for 6 years and never been prescribed anti coagulants. ? I would see my GP ASAP as these help prevent strokes far more effectively than aspirin. You do not have to take Warfarin as there are new drugs available. Not always mentioned by the medics as they are more expensive. One of the main benefits is that you do t have to have constant checks. Good luck.

  • Hi Steve - I don't think I've ever seen a question on this site that doesn't relate to AF and I must say that I like the site as it is now. I'm always happy to give support to anyone who comes onto this site about anything that's giving them cause for concern, even if it's about a pimple on their chin!

    I do however understand what you mean by some members advising others to take certain types of action - or else!! I know quite a few people who have recovered from AF, never to have it again, without medication or an ablation. I think suggesting someone see an EP as soon as they have been diagnosed is questionable. My EP has no interest in his patients other than to carry out an ablation. Perhaps other EP's are different.

  • I have heard other people say that about their E.Ps too but mine is not like that. His hope is that rhythm or rate drugs work while being realistic that if they don't an ablation is the way to go. I guess folk that are having an ablation are quite anxious about it and need to talk that's maybe why it is often mentioned on here and I think that is one of the things a forum is for. X

  • Being one of those who recommends s an EP ASAP I would just like to explain that I suggest it as I believe people need, yes need, to have the best, most current, expert advice they can. An EP has that expertise whereas cardiologists and GPs may, but most often don't. The tragedy is that there are too few on the ground.

    Definition of expert:- someone with more than 10,000 hours of practice.

    My belief is also that large structures like the NHS change from pressure from the ground up, not the top down, therefor we AFibbers need to shout much louder to ensure that more EP can be trained in the latest thinking so they may offer the best most appropriate advice for each and every patient.

    Ooh Steve, you do manage to bring out the argumentative side of us!

  • All EPs that people have spoken of , including the one I have seen, are in a position to give you the facts about ablation as it would relate to you, and then seem quite happy to wait until you have made a decision, wait until you have tried other things if you wish to- the problem is that if you are not given the opportunity to get this advice you may struggle with inappropriate or inefficient medication without knowing there is an alternative to consider.

  • That is very true.

  • Steve now feels he is part of the AF family. Why does black sheep spring to mind.....?

    Brother Steve is either having us all on, hoping to wind up other forum members with his provocative comments - some folk do that of course - though quite why is beyond me. It's so juvenile.

    On the other hand, and this is perhaps more worrying for him, he may really believe the nonsense he spouts.

  • I am honestly not trying to wind anyone up, just give out positive thoughts, when I get a headache I do not believe it will become a brain tumor, when I get a cold I do not believe it will develop into Pneumonia and when I am in AF I do not think I will have a stroke, I have a perfectly healthy heart that no longer likes me to drink alcohol and tells me so by becoming erratic, as I get older and if I do not cut out what causes me to have AF then yes I will opt for an ablation, but at the moment I will continue flying the flag for positive thoughts not diving for the medecine cabinet every time something does'nt feel right and before anyone comes back with why take Asprin then, that is because it is recommended for everyone over 50 with AF or not because old blood gets thicker.

  • I think you make some good points about medications and staying positive Steve. I won't be updating my profile though as I am wary about giving personal information online.

  • Steve, old chap, you really are deceiving yourself. Your headache and brain tumour analogy, I understand. Colds becoming pneumonia, that too is highly unlikely, I agree but AF with no anti-coagulation is in a different ball park. TIA, which is the same as a stroke only usually shorter and less damaging, and the full blown thing are lurking just around the corner. I don't want to scare you but look at all the posters on here that have had TIAs and strokes - and of course we're only hearing from the lucky ones who are still able to post. We're not talking national lottery odds here. More like 'long odds' on a horse. But as you well know, outsiders win races every day.

    I'm not trying to talk you into getting anti-coagulation, that's up to you of course. But to ignore the evidence is, to me, just plain stupid. And I must contradict those posters who praise your positive approach - there are some lovely folk on here and I think they are just being polite. I would simply say there is nothing positive in what you are doing Steve, nothing at all. But it's your life. Good luck and let's hope the 'favourites' keep winning.

  • One final point, I promise. You say that aspirin "is recommended for everyone over 50 with AF or not because old blood gets thicker." Steve you couldn't be more wrong! Platelets decrease with age and you are taking an antiplatelet. So, for whatever reason you think that might be beneficial, it ain't to stop "old blood getting thicker"!

  • Sorry to contradict Steve ( OK not really) but Aspirin is not recommended, my husband (75 at the time) thought he should be on it but his doctor said the balance of risk was so fine that it was purely a personal decision.

  • I appreciate your thoughts Steve, and think you were trying to make a very good point. Not so much about medications this time :-), but clarity in the title of our posts/questions. It does help others coming onto the site "filter" in a more efficient manner what is specific to them. All that said, cruising about a bit, also allows us to throw in a good word here or there for someone!

  • I think it would be helpful if more people filled in their profiles in the forum. I just looked up a few, and most only state the date they joined. I'm not suggesting a life history, but an idea of who has just AF and who also has had major heart problems might be useful. Also who takes which medication. And which country or area people live in.

  • Good point, will go do that later.

  • Done, thanks.

  • Oh, good. I've added to mine slightly.

  • I take your point about some people having several heart-related problems. What I do is look through the posts for ones I am able to comment on because they relate to the situation I'm in (I have AF but not, as far as I know, any other heart problems, and I'm on warfarin and bisoprolol). Hopefully everyone who comes to the site will be able to sift through and understand that it's a mongrel condition, as Bob says, and we all react differently and are on different drugs.

    As a side note, I am 56, CHADS2 score of 1, I wanted to be on warfarin because my male cousin, who also has AF, had a series of TIAs at around my age. I know someone else who had one, and described it to me - it sounded utterly frightening so I'm planning not to, if I possibly can...

    I guess the decision whether to go on anti-coagulation or not at the end of the day is a personal one, but definitely one to be made when in full possession of all the facts. There's a lot of good information out there, not least on the AFA website, to help people.

  • When I wrongly thought my problems were sorted post op I did post on here if I could remain a member and was reassured by the replies. Causes and consequences of AF are different for us all. If people want to talk about it then should we not listen? Maybe time for me to not be a member. I have enjoyed being able to talk and offer some of my experiences.

  • I noted you were a Blackpooler, and was rather wondering if you might be interested in meeting up with other North Westerners.

  • Frills et al,

    I think it is important for those of us fortunate to have improved our QOL to hang about here to support those newbies who arrive terrified and confused. If we all went away there would be nobody to do that.

    It is also true that all forums will get their share of trolls who just seem to want to wind up other members or spread false information and sadly there isn't a lot we can do about that but feel sorry for any individual who's life is so empty that they get pleasure that way. .

    I am very hopeful that the aspirin debate will soon be a thing of the past when the new NICE guidelines are issued for AF saying AF--give anticoagulation. At the moment a useful drug is being discredited purely because it is being used wrongly and let us not deny that aspirin has many uses in cardiac care. I was interested to read SRM GRandma's facebook post yesterday which linked to US FDA new guidelines saying AF required anticoagulation and that aspirin had no place in PRIMARY stroke prevention. In other words as a preventative rather than a medicine to assist post stroke where is was valued.

    It is also important to recognise that things change and many doctors take time to accept change especially when it is as rapid as AF treatment has been these last few years.

    I also think it is important to recognise that stroke prevention is one if not the most important aspect of treating AF but it was not always like this. I remember clearly sitting in a committee meeting at BHF in September 2007 when stroke prevention as part of AF treatment was first mentioned and I was shocked as for three years prior to that nobody had even mentioned it!

    Finally lets us embrace our differences both in attitude and symptoms and not try to compartmentalise this forum. too much. It is far too valuable for that!

    Bob

  • Bob cheers for that will stick with it a while longer then. As for Northwesters Remlin is there a group im not a Blackpooler but thats my local cardiac centre which i whole heartedly support

  • i know there is a hospital based group in Sheffield, but I don't know if anyone meets in the north west. I live in south Cumbria, but Blackpool is my cardiac centre too. I'm happy to travel anywhere like Preston or Bolton by train if anyone has an interest in meeting.

  • well ive just statred cardiac rehab so maybe after through that process

  • My final comment on this (my posts do tend to last a bit don't they !) is that my only condition is that I have PAFib, am under 55, male and have no other heart problems. All the medical advice out there says that I do not need Anti coagulants because my risk score is 0 and therefore have no risk. If people in the same category as myself are put onto these drugs, then their EP's are going against current medical knowledge and that is what I would question.

    Stay healthy

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