Is this the end?

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I've been told there's nothing can be done to improve my situation. I have permanent atrial fibrillation and atrial flutter and although I have a pacemaker that does all the work I feel ill all the time. I had an AV node ablation in 2005, and had a Star Edwards valve put in to replace my mitral valve in 1985.

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  • Posted

    I am so sorry Hazel, Have you been suffering a long time?. I have been experiencing Af for the past 15 months and am currently being considered for AF ABlation. Beth
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  • Posted

    To Guest. I have suffered for at least 5 years with AF. I have been fitted with a pacemaker and now awaiting an AV Node Ablation. I am not very happy to have this procedure, but so far most medications have failed. On reading your story, I would like to know how you are feeling now. I have read on a number of forums that having the AV NOde ablation is a last resort and that one id then pacemaker dependant. I do know in America that this procedure is very rarely used, it is so final. Is it possible for you to give me more information. Maybe were you had the procdure, how you feel now, are you worse now than when you just had the AF - before the procdure. Appreciate any information you can give me. Thank you.
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  • Posted

    I am at the moment considering a pacemaker, but it scares me that I would then be totally dependent on a pacemaker, apparently when you hear that somebody has a pacemaker it is to nudge the heart if it stops, apparently mine is because my heart goes too fast so all the electric nodes would be blocked. I have had 2 ablations and 4 cardioversions. I am currently on Amiodoron but it has affected my Thyroid, so now it is underactive, I feel currently very unwell and seem to be dragging myself around, I seriously wonder is the medication causing me more problems than the AF any comments please would be appreciated. Beth
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  • Posted

    Hi Beth ,I have AL Amyloidosis with cardiac involvement and had a stem cell transplant two and a bit years ago which has given me A 100% clonal response. I suffered initially from VT episodes and then frequent AF once the amyloid was under control.I have an ICD (Implantable Cardioverter Difibrilator). I was due to have a cardioversion but spontaneously reverted to sinus rythm before they could do it thank God. I have been on amioderone for nearly two and a half years amongst other numerous medications. I used to sometimes wonder myself how much truth there was in stating the side effects of drugs cause more problems than the reason one has to take them. I have to have regular renal, liver and thyroid function tests because of my amioderone usage. Fortunately for me I dont have any thyroid problems as a result of the amioderone (too much iodine intake) as my dosage has been carefully regulated to give me what I need and no more. My cardiologist humerously said on prescribing the drug , " It is like administering a poison which just happens to have a side effect of controlling AF" Very funny , NOT! The AF made me feel very sick and unwell but when it went I began to feel normal again and now do. I still take the amioderone, albeit at a fairly low dose, so maybe that drug in itself was not the culprit for me but the side effects of long term usage for yourself sounds like a contributing factor. David
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  • Posted

    Further to Beths comments on AMIODARONE, I started taking it ( 200MG) around 2004 for an irregular heart beat, but was not regularly monitored, such that it nearly drove me into the ground because of thyroid problems. At the time we all (including the Doctor) thought I had lung cancer, so an underactive thyroid was a good result! I now have to take LEVOTHYROXINE to control it and I still suffer today from sun sensitive skin another of its nasty side effects. If possible avoid AMIODARONE, or if you have to take it, make sure you have a thyroid blood test at least every 3 months and report back to the doctor as soon as you feel unwell. Protect yourself from the Sun. Good Luck. Bob
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  • Posted

    I really appreciate you comments, Thank you, when I am in AF I feel really very unwell, but looking back since I started with Af when out of it I felt reasonable well. late last year I ended in hospital 4 times and it was decided that they would give amiodorone in drip form which I then went back to sinus rhythm after 2 days, I had second ablation under anaesthetic 22nd of December, apparently I was in AF when I went into Theatre, I just thought I was stressed out, since my ablation I think I have had a few episodes of Af but have quite quickly gone back into sinus after 2-3 hours. A few weeks ago I felt very unwell, my blood pressure was 230, ( I had had an unusually stressful day) and I had what I think may have been a panic attack,they also found that I now had an underactive Thyroid They had thought of stopping the amiodorone 6 weeks after the op but kept it on because of the last hospital admission. I now take 2.5 Levothyroxine per day but some days have absolutely no energy. I am seriously thinking of cutting down the Amiodorone 100mg and just take 1/2 a day and then cut it out completely. In October my thyroid . levels were fine and normal. What strength of Levothryoxine do you take Bob please? I really appreciate this forum as at times you can feel very alone. regards Beth
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  • Posted

    Hi Beth me again

    I take 100mg of amioderone every 2nd day and am ok and it keeps me out of AF and have done for 12 months. I was on 100mg a day and 200mg a day before that. David B

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  • Posted

    Thanks David, I made a mistake when I said I was on 2.5 Levothyroxin I have checked and it is .25mcg so I would imagine quite a difference. I am going to cut the dose of amiodoryn down slowly and hopefully I shall soon feel better. What do you find triggers off the AF?,for me I suspect alchohol, very strong coffee and stress are the main things. It is really helpful to be able to talk to someone. Thank yousmile regards Beth
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  • Posted

    Hi Beth

    You really need to discuss your dosage with your cardiologist before you change it, there may be reasons for the dose you are on that you are not aware of. Suggest your plan to him and give him your reasons and see what he says. I have found that you have to be your own advocate as no one else can do it better. Remember everyones problems are different in some way so what is good for one person may not be good for another. In saying that it is still really good to be able to compare other peoples experiences with ones own as sometimes there may be a common denominator that proves helpfull.You are not alone believe me.

    Because my chemo did my kidneys in I haven't drunk alcohol for 2 and a bit years. It also changed my sense of taste so wine , beer and spirits taste absolutely horrible to me still. Also I haven't been able to stand the taste of coffee untill recently and am just "learning" to like it again so I can't really say if those things trigger AF. What I can say is that I haven't had AF since I spontaneously reverted to sinus rhythm quite a while ago. I also haven't worked since my treatment. Can one deduce from this that the reason I haven't had AFis due to the fact I haven't had any alcohol, coffe or stress, I don't really know , probably not, who knows but you could give it a try, you have nothing to lose and your overall health would benefit from abstaining from them anyway. Be kind to your body, walk every day and your heart might just reciprocate, mine did!!. Be good and keep well. Remember ,the cup is always half full and never half empty!.

    David

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  • Posted

    David, I totally agree with everything you have said, David I used to be an Advocate on behalf of people in Residential care but when advocating for myself I am hopeless. I am quite cheerful really and take life as it comes, but feel that we have to take an interest and responsibility for our own health. I am very fortunate I have a brilliant Cardiologist taking care of me and rightly or wrongly have faith in the NHS, they have been brilliant.

    Regards

    Beth

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