Over recent weeks I have been looking through various web sites and am now wondering whether it is primarily people with side effects or problems who post. If that is the case then I feel these sites may not provide a truly balanced view on the many different medications and treatments available, and in fact may scare people off taking something, or undergoing procedures which might help them.
I am certainy not disputing some people have unpleasant symptoms and reactions, or saying that they should not post on the sites, for without doubt there is always a great deal of helpful advice to be gained and sharing problems can in itself be therapeutic. I am simply concerned that ones expectation of side effects or difficulties may be heightened from reading a number of these posts.
I was diagnosed with AF, prescribed 2.5mg of Bisoprolol per day and Warfarin ( INR still fluctuating). So far I have not suffered any bad side effects, and my BP and heart rate is much more stable now. I certainly consider myself fortunate, but believe that there are probably more people like me who just "pop" their pills and get on with their lives.
Yes, being diagnosed with AF is frightening, and imagination can conjur up the most grizzliest of scenarios, and it is easy to believe every tweak and twinge ( which are perfectly normal and you have had all your life) may be something serious. However, I strongly believe that if one expects the worst it will most certainly be delivered, but if one takes a positive view then it is far easier to face and overcome life`s "hiccups".
It would be good to see more posts from people who have not suffered any bad reactions or grim side effects. I am sure there are a lot of you out there.
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Langara
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Hi Langara, Yes, I agree, it is so "heartening" to read about positive experiences and there are lots of positive people who post on here, but they do seem to be a bit quiet at the moment, perhaps it's the holiday season. The thing about any treatments/medications is that they are all individual and what works for 1 person may cause problems/side effects for another, so it is good to be well informed via the AFA literature etc. to be able to make a personal informed decision. I like you have been doing great with a heart that feels so much more settled. No side effects from the Bisopralol, and only a few minor blips since early April, happily getting on with travelling and loving life, and off to drink a very low alcohol cider which is waiting for me in my sunny garden. (slight hiccough today with an eye problem that hopefully will soon be resolved!) Stay well and happy.
I think you are completely right, there are a lot of people who pop the pills and get on with it, and I would count myself amongst them, and also that many of these do not post that everyhting is working fine for them.
But I would disagree that these posts are scaring people, or putting them off procedures, or even making them think about side effects. And I really do realise that this is not quite what you are saying, but that the balance of positive against negative sometimes seems wrong.
It's a balance of course, but I would ask you to look back to the many many people who come to this site and others when they are newly diagnosed, and (like you and I) scared to even think about the consequences and the future, and I think we can offer a balanced view from people who have actually gone through what they have gone through, and who have already come through the other side and are getting on with their lives.
I can only talk personally of course, but I have never been so scared in my life as when I was diagnosed, I was sitting in this chair revising my will, thinking about leaving notes for my children, and even thought about buying a funeral plan.
But these forums changed all of that for me, I found there were lots of people much worse than me, who had been with serious paroxysmal AF for tens of years, and they were "getting on with their lives". And yes there were potential side effects and complications, but the stories of these simply made it easier for me to ask questions of the cardio and the doctor and also be much more informed about my condition.
Even the ablation stories (and I have never had one) only make me less nervous should I ever need one, and I fully admit that prior to my cardioversion, I watched the You Tube video which scared me unbelievably, but this forum and others told me it was nothing to worry about (and it wasn't)
So I think that supportive sharing of challenges and problems will only help people, and that providing there is a balance of responses (note there is unlikely to ever be a balance of questions) then we are helping all who come here.
I have no symptoms now, as you say I pop my pills and get on with it, but I "hang around" here to ensure that others get the help and support that I received from Bob D and others when I was newly diagnosed less than a year ago. For me I'm paying it back, and hopefully paying a little forward.
I would also point out some recent posts, where members in challenging circumstances have been told "it's not as bad as that" and "don't worry this will pass" or similar words, which I consider very supportive and hopefully for them and for other readers will help them to understand their condition.
Also you need to consider the people who read but do not post, and there are a lot of these, they just come here and read the questions and the answers and/or search for answers to their problems without ever interacting with us. Just look through the total membership compared to those who post to understand just how many of these there are.
So in summary, I agree the questions and the posts are unlikely to offer your "balanced view" But I think the responses and the follow up and the support do exactly that, and long may this forum continue to offer that
We are on the same page! I try to look at AF as a blip on the radar, something that is a small part of my life, not the center of it. If I focused on it every day I would be miserable. Sure there are meds with side effects, lots of trial and error to see if there are things to help keep the AF at bay, but I think it is key to live with a positive attitude and realize that everyone has something in this life. This is what I've got and it could be a lot worse. I think the forum is fabulous for people with questions to throw out, but I also think that it could really scare people who are just diagnosed into thinking it is all just downhill from here! If you remember that what you think about determines your mood and how you feel, I think it is critical not to think about the AF 24/7. Be happy, be well, and deal with everything as it comes.
I have missed you, and your positive wisdom. I didn't know if it was because I seem to have a problem finding things with this new format, or if your shoulder injury was hindering your typing. Do hope it's healing well and that your enforced rest hasn't been too frustrating and painful. Hope your little granddaughter continues to bring you joy and laughter...wishing you well..Liz
I have missed you too, Liz! And you are right. It is a combination of both things. I have to wiggle my right hand free from my sling to type with both hands, or plod slowly with left hand only. Neither is conducive to large amounts of typing. And the format is just not as friendly for me as it was before. Really much more difficult to find everyone. I've gotten a lot of reading done during the past 3 weeks and hopeful that my x-ray on Monday will show enough healing to allow some beginning movement. The pain is mostly gone now so it is pure nuisance. My granddaughter, however is still pure joy
An interesting take Langara BUT I would say that for many people knowledge is power and reading about things only helps in the long run. As Ian says we are all different and some will obviously have unpleasant side effects to a particular drug whilst others have no problem. Bisopropol is one in particular where some people have found that taking it at night reduces the side effects and that gem came out of discussion on forum. Some while ago we had the opposite complaint- about me actually- that I was overly praising of ablations having had three. I still believe it is the best approach to the treatment of AF and the sooner the better but I do understand that many people find the idea quite abbhorent as they read of the (small) risks and would disagree with my views. I accept that and try to temper my advice with reasoned arguments when asked. I do agree that it is usually (present company excepted of course) the people who have most problems who coming looking for advice and support whilst the ones who have found what they want and sorted out their lives tend to drift away. It seems to be only people like Ian, Grandma and I plus TIm where ever he has gone to who, having been scared quite stupid in our day, hang around to try and make sure nobody else feels as alone and cared as we did.
It is just a case of getting on with your life, and look to improve your well being by exercise, stopping the ciggies, less eating and generally being aware. I continue to function as a member of the emergency services, front line ... and continue to box and keep fit. Yes i enjoy the odd drink and I'm 50 this year. There a two ways of dealing with this, and being positive, and living your life is one. The other means your life is restricted and poor. If its tea and sympathy your require, the latter is for you, but you will miss out on so much.
Get out, get fit, get active and change your life.
Hi. I too am a positive person who gets on with enjoying life to the full. I am a very active person. However until I found this forum I felt very alone with the A.F. problem. Discussing my problems on here has helped to make the whole thing feel more normal. I for one am very grateful for all those who respond. Please don't go away any of you!!
Not likely! Yes we know how frightened AF can make one . AF is a long journey with many winding roads and steep hills but hopefully the fellow travellers here can make that journey manageable for many people. There will always be some for whom help is within and they don;t know it but we keep trying.
I am now better off physically than before I went into permanent AF....yes I did write that.
I had been in paroxysmal AF for many years without any apparent effect on my performance (I monitor my times on my bike regularly). When I went into permanent AF I didn't notice a great deal of difference except when exerting a fair bit of effort when I started to suffer a drop in performance. But after a year I noticed that my heart actually seemed to be getting stronger again - possibly because it had done a fair bit more effort (though it's usually within normal ranges) or because physiologically I had become used to the irregular heartbeat. And now I am cycling faster than I have in the last 4 years (often wiping off a minute off my best times) - the loss of effort when maxing out is still there but I have changed the way I exercise and how I approach hills to wipe out most differences.
I have a CHADS2 score of 0 so am not on any meds nor in any significantly raised danger of a stroke. I am very lucky - and my heart goes out to all those less fortunate than myself - but AF can have it's good points.
I'm a great believer in the "knowledge is power" brigade. But I do know everyone is different .My OH ( who has permanent AF) needs (and wants) to know as little as possible. This is why when I was working I was always very ambivalent about giving information leaflets ( I worked in cancer care). Once you have grasped a piece of information it can never be dismissed. In an ideal world, information would only be given in a way appropriate to that person. With AF in order to make informed decisions it is my belief you need information but you also need a health care professional whom you trust, to explain the implications for you,the individual. This forum is such a great means of giving and receiving support. Live long and prosper!!
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