I'm new to the group but have been having treatment/tests for years now. Initially I was diagnosed, after a 24 hour heart monitor, with an SVT. They tried ablation to cure it but failed, they could not stimulate the SVT during the procedure. I was put on bisoprolol 1.25mg but this had to keep going up as it would help for a while but then stop. I got up to 10mg a day but was incredibly tired so they tried me on Flecainide but it didn't control it at all on its own. I'm now on a combination of both which is making things manageable, although still very tired. Then a cardiologist (every time I go its someone different) decided I had AF but gave me no info, and no additional medication. Only on looking it up myself did I discover the stroke risk so I went to my doc. He wrote to cardiologist who said to put me on Clopidogrel. This made me very ill so I stopped it. My doc felt I 'should be on something' so told me to take aspirin but I cannot tolerate this, I'm already on Pantoprazole for acid reflux etc due to hiatus hernia and am having to take double the highest dose per day to compensate, not something I want to do long term. My latest visit to yet another different cardiologist resulted in her saying she thinks I have both. She sent me for 7 day heart monitor to see what my heart is doing over a longer period and said I should go on warfarin (my Chads is 2 and Chads vasc is 3). She took a month to write to my doc and then said my symptoms were under control and was discharging me back to his care! No mention of warfarin so he won't prescribe it and why send me for 7 day monitor if discharging me! Bit fed up with it all now, I just want a definite diagnosis and to know what we can do for it. If I don't do much I can keep it under control, but I can barely reach the top of the stairs as my legs feel like lead and I just feel like an old woman (I'm 43!). I was incredibly fit when this started, now I'm 4 1/2 st heavier which doesn't help. Not sure if I'm asking anything here really, just feels good to offload it a bit!
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Beanz1970
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Hello Beanz and welcome to the forum. I am sorry but I want to throw the computer across the room when I see posts like yours! With a Chads2 score of 2 there is no doubt that you should be on warfarin and aspirin is of no earthly use for people with AF as far as stroke control is concerned.. It is an antiplatelet which thins the blood but does not stop it clotting. I addition it can cause harm such as stomach bleeding etc which you already know. I would go and knock down the door of your GP and demand to see somebody who is practising in the 21st century! Assuming that you are in UK there is a list by area of specialists on the main AFA website and it is your right to be treated by who so ever you choose .
Having had my rant, AF is a long journey and you may well find it takes quite a while to get on top of things but it is important to get proper diagnosis of what is going on As I said it is your right to be treated by somebody that you can trust to have your best interests at heart (pardon the pun) so if needed change your GP. You have a lot of life left and need to understand that whilst AF may be in your life it should not be the whole of your life. I'm sorry I can;t wave a magic wand and know what your condition actually is but somebody should.
Bang some tables, rattle some cages but don't give up!
One last thought, get your doctors to visit stopstart.org.uk . It is a website designed for doctors to get them to understand why aspirin is wrong and why they should be prescribing warfarin
There are even better anticoagulants than Warfarin, ie.the brand name Eliquis, which is expensive so probably not offered in UK.
Bob, I sent a message to the AFA about aspirin and they said it reduced my stroke risk by 20%. All I can say is that the information out there on aspirin is confusing... I'm sure you're right but it is hard to convince doctors when there is such disagreement about whether it helps or not.
When I was diagnosed in january this year here was a lot of messing about before I was put on warfarin. Finally I went to a&e when I was having an attack. The doctor there agreed to prescribe warfarin and have been on it since with no problems. So I agree with Bob, push, change gp, ring cardiologist and ask them to write to your gp telling them to prescribe warfarin, go to a&e. Do not give up - this is your life and you are entitled to proper treatment. Wishing you all the best. Marie
Oh it's so maddening when you hear of situations like this . Find out all the info you can; write it all down and then go see a cardiologist of your choice. Also take with you all the questions you need an answer too...write 'em all down too ..I do because I can forget to ask them if I don't. As far as Warfarin ..you so need to be on an anti coagulant; I couldn't use warfarin as it upset my I.B.S. so am now on Rivaroxaban one of the newer drugs and all is fine now.
Bisoprolol does make you feel tired and am in the process of trying to find an alternative..... so fingers crossed for us all.
Sorry to hear you are having problems. I have both AFib and SVT episodes, seems to start with an AFib episode and then SVT kicks in - spooky. It hospitalizes me every time, this last time once month ago for 5 days while they got things under control and on track, hopefully! I am taking a Beta Blocker, Atenolol and Flecainaide a heart rhythm drug, seems to be working rhythm wise but some days I feel faint and dizzy, I assume due to the drug combination. Awaiting app with an Electrophysiologist.
Stroke risk - I too was on aspirin for 5 years (no bad effects, I too have a hiatus hernia which I am fairly convinced plays a part in initiating my AFib episodes). I too have the same CHADS and CHADVSc scores as you although I am older than you. Early this year I asked my cardiologist about anticoagulation as I was nervous about aspirin being reliable in lessening stroke risk especially after attending AFA patient days and hearing and speaking with high profile cardiologists in attendance all saying aspirin wont aid in reducing stroke risk in AF.
I was prescribed anticoagulation at my last cardiac consultation and am taking one of the new novel ones, Rivaoxaban. Believe me when I had my violent attack a month ago I was so pleased I was on anticoags which gave me some protection. The episode was so bad I was given intravenous morphine for the heart pain. I would strongly suggest that you speak to a doctor again re anticoagulation. Better safe than sorry.
I was put on Warfarin straight away once they diagnosed AF in 1992 and been on it all the time except for a short period that they said I was fine. I then had a mild heart attack becuase I was peaking at 179BPM but not passing O2 to my heart and it got cramp for want of a better word. I had to go to a differant doctor yesterday who will not accept my cardilogists report that I have Pulmony Fibrosis and pluresy even though he does agree that the infection and treatment would have caused the damage mentioned? I was in ICU for 32 days and a coma for 12 days. I now have to wait until October to get things straight it seems.
I have put on the pounds/kilos as I have no energy and get so short of breath now. I do not have an appetite and I do not think I over eat. I know I dont execise but even short walks are painful. He did check my BP which was high but offered no answer bar "lose weight"
I used to be very fit and taught Karate/fitness for 17 years, the old saying "No Pain No Gain" is wrong!
Thank you to everyone for your replies, it's been really good to hear other people's views and about their situations too. Mt doctor has now written to the cardiologist asking why I have been discharged etc so will see what happens. He gave her the wrong CHADS scores though.... I had a pulmonary embolism about 6 or 7 years ago and they just dismiss this and I know it's a vein 'thing' rather than an artery one, but I wonder if I have this 'sticky blood' that I've read about? I believe there is a test but I have never been offered it, does anyone think I should have been?
I will check out the list of specialists on the website and the link about aspirin. The cardiologist I saw did agree that aspirin was pretty poor in stroke prevention, reducing chance by only about 10% whereas anti coags reduce it by 75-80% she said, she even spent time discussing the pros and cons of Warfarin vs the new type, so why she told my GP what she did is beyond me!
Anyway, thanks again to everyone for your help. I do feel more empowered to get this sorted now.
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