Afib for 4 years

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Hi to who ever is Reading this ,, i have Afib ,, its Been a long bad Strech of 4 years,,,  been to the Hospital at least 200 times i have been taken by aMbulance  i have been in the Intensive care unit,,, my heart goes nuts at times it starts with the fluttter then most of the time it just takes off over 180 beats a minnute,, i am on sotolol  , there is only one more med for them to try and again i am going to be hospitalized for 3 or 4 days to keep a eye on me,, i have a lot of health problems i am 51 i have both shoulders that r shot ,, i mean torn rotator cuff tears sorry about the spelling ,,i am in pain everyday i have a blown disc in my neck they cant give me shots inmy shoulders becouse there is no more cartledge left,, and they cant giveme the shots in my neckand spine becouse i am on bloood thinners,, i have afib about 7 to 8 hours a day,, if the last medication does not work then its time for the Ablation.,,, but they half to zap 4 parts of my electric lobes thats a process,, the doctor that does these has done a ton i am from new york,, but he said he has puntured 2 hearts doing it and had to call in a heart specialist to drain the blood in the heart,,, well they want to do all these other surgeries but they wont touch me becouse i am on blood thinners Cumiden 3 mg a night ..the other and the last med is called Tikosyn God i pray it works,,, i still say the gas i have brings it on,, i had my Gaulbladder out 5 monthesago...thanks to who ever reads this,,  email at _____ if any sugestions... thank you.

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  • Posted

    you are going through a horrible time and I really sympathise.  I was diagnosed 2 years ago with AFib, apparently I could have had it for years without realising. I have been on Warfarin blood thinner since then and have it measured at our local Doctors on a regular basis.  I was also diagnosed with a leaky valve and I had this repaired in January, at the same time I had the 'Maze' or ablation procedure to try and put my heart back into normal rythm.  I have just had a 48 hour monitor to check if it has normalised or not and waiting for the results.  Apparently it often does not work, especially if someone has had AFib for a long time, so I am not expecting a good result but glad it was tried and resigned will probably have to continue taking Warfarin!  My heart rate is high and I am unable to take medication for it as it affects my diverticulosis but it has never been as high as yours.  Because you have had so many hospital stays due to this I feel the ablation should be tried - its a case of the lesser of two evils really!  Whichever procedure we have there is always a side effect or risk but surgeons do this procedure on a very regular basis and if it works your quality of life would be much improved.  Whatever you decide I send my best wishes to you.
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  • Posted

    was given Furosomide and Bisoprolol last June, after taking them for a week had worst attack I have ever had, lost a stone in weight and had to stop taking them. Furosemide being a water tablet it sucked the water from my colon, and when combining them with Bisoprolol - well, it was a disaster!!!!!!!   My pulse was still high after my op but couldn't take the tablets so just had to put up with it!!!!!  I will await results of my heart monitor with interest!!  I hope the medication works for you, you obviously have enough to deal with being in pain constantly.  All the best.
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  • Posted

    Hi Jeff. It took a year to find a med that worked for me: tambacor [general name] flecainide acetate. I have been on it for 30 years! The USA Doctors often think it's Kryptonite - but it's really worked for me. Btw this is a UK site as you know - but I have US family and once when I visited and told medics there what  |I was one  - they flipped.  Give it a shot! There is v little to be lost by trying. 

    Sadly after 30 years, it's less effective than it once was - but it has been totally effective for me. Good luck.

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  • Posted

    OK. You are clearly in the US and this is a UK site so the drugs may not be exactly equivalent. I have US family too so I know a bit about the system.

    OK. Have they tried flecainide? For me it was a magic pill. In the US doctors get their underwear in a twist prescribing it. May be worth a try.

    Secondly I think Cumiden is an anti clotting agent a bit like warfarin in the UK? Well in order to have an ablation here you MUST take it to pevent blood clots forming after and during the process.

    In the UK ablations are ONLY done by heart specialists - and in my opinion you shpuld demand that this is what happens. Incidents of puncture are very rare - but have a heart guy there. I am very concerned bout your doctor honestly. See a cardiologist to have this done.

    Long lasting permanent A Fib is really not uncommon especially in older people. Some people have it and have few symptoms.And yes, stomach gas can set it off! Especially if it the type of AFib that is caused by disruptions to the vagus nerve. This is typical for Paroxysmal A Fib - that is not A Fib that occurs all the time.

    |Lying down with a full tummy, indigestion, certain physical positions. I have this type of A Fib and lying down is the most risky thing I do!! So I always have anti-acids, when my heart is skippy I sleep slightly propped up. I use carotid massage to help and a kind of breath holding to try and counteract the nerve impulse. I also take omeprazole (blocks too much cid beinf made in the stomach)

    I've seen lots of US web sites with this kind of information - so fingers crossed you can start taking control. It also sounds as if your pain control is poor. They may not be able to operate - but your pain should be controlled. I have lupus and a few really mangled joints (smashed in ana accident) and my doctor takes pain control seriously.

    I really think you need to have a chat to another doctor for a second opinion. All good wishes

     

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    • Posted

      Derek

      I'm going through hell at present (like a lot of other people who contact this marvellous website) and am very interested in trying to find out more about the vagus nerve and its relationship to SVT and AF. For the past month and especially since my meds have been messed with my abdomen, chest and waist swell up like a balloon just after eating - in fact I rarely finish a meal now and only graze, and that even is followed by gas, pain and inevitable espisode of SVT/AF.

      Have you any tips please on how to stop this. I'm taking Gaviscon after eating so that its easier to bring up but really must find a way to get round this?

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    • Posted

      No - they've now put me on 100 flecainide twice daily + 1.25 bisoprolol twice and a day and they're not suiting me at all, together with all the accumulated gas: A&E gave me some tablets to help release it but the medics don't understand that it's not being caused by indigestion per se but this SVT or AF or whatever.

      Thanks for your message

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