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Atrial Fibrillation Support

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Sherrill profile image
8 Replies

Hi All

I am new to this site. I have been looking for this type of site and support for some time as tere is little support in my area of the UK. I was diagnosed with Left Bundle Branch 3 years ago quickly followed a few months later with Total Heart Block which resulted in a having a Pacemaker inserted. All went well for a couple of months. Then I started with Palpatations and was diagnosed with AF. I was prescribed Ramapril and Amiadarone but unfortunately the Ramapril resulted in Anaphlactic Shock and the Amiadarone resulted in Hyperactive Thyroid. I was taken off both of the meds. Luckily the Thyroid has now corrected itself. I am now on Olmesartin and Bisoprlol 2.5mg, They tried to increase the Bisoprolol but it brought my blood pressure down too much.I am also on several different strong Painkillers for a damaged back, My middle name is Lucky lol

The AF was quite good for a while but has recently been quite bad. I have today been set up with a 24 hour heart monitor by the hospital. Strange as it may seem to some I am hoping that I have a bad day today and watever is going on shows up on the monitor. I can deal with things if I know what they are its the not knowing why I have been so bad that is worse,

I have coped recently well with all te life changes i have ad over the last 3 years but this latest setback as knocked the stuffing out of me and im not coping quite so well, Reading the comments on this site has beem a great help both with knowing I am not alone, (I get so fed up with the Drs saying I am so young to have this, I am mid 50's by the way.) It has also helped me by giving me questions to ask the Dr's.

I look forward to reading more of your comments

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Sherrill
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8 Replies
shirlygirly profile image
shirlygirly

Oh dear so sorry for all your problems and I cannot really help as my

problem is nothing like yours. I had an ablation 5 weeks ago and although

it hasnt been a complete success so far, I know its early days so I have to

give it more time. I too take bisoporol and I had to cut it back to 1.25 mg

for same reason as you. I was offered pace and ablate as well as ablation

or amiadarone, I chose to try ablation as I heard of the problems with the

drug and I wasnt ready to try a pacemaker, so I am really hoping it works.

I found the 24 hour monitor not really helpful and ended up with a 7 day

one which produced results. Im sure you will have plenty of good advice

from the people on this site it was the best move I ever made.

Good luck hope you find answers to you problems soon. Shirley.

Sherrill profile image
Sherrill in reply toshirlygirly

Thank you for your response. Dont worry about having a Pacemaker. Once it heals nobody will notice it is there unless you want to show them, Its a great party piece making it visible and moving it slightly, my daughter calls me The Mummy after the film. Seriously though I forget its there. I used to feel it slightly when it kicked in but dont feel it at all now. I have a checkup once a year. It is the easiest part of my ealth problems.

jennydog profile image
jennydog in reply toSherrill

I note that Shirley has made the point that I was going to make re the 24hr monitor. In my judgement it is a waste of time. At my recent 3 months post-ablation check I was offered a 48hr monitor which I flatly refused. I said that I would only agree to a 7 day ECG loop monitor, the type which is permanently switched on. I have had 4 monitors on over a period of 5 years. The type that you switch on when you think that you are fibrillating is useless to me as I sometimes wake up with AF and with the best will in the world I can't switch it on if I'm asleep.

Best wishes.

Sherrill profile image
Sherrill in reply tojennydog

I think that getting the medical profession to believe what you are telling them has been the hardest part. I have spent many times in tears because I have felt at best not believed and at worse being seen as a hypochondriac. I have lost count the number of times I have been in hospital. The portars say hello when I arrive as they know me now lol

jedimasterlincoln profile image
jedimasterlincoln

Welcome to the site. I've been here a little over a year after AF started and resulted in 4 DC cardiversions in as many months and various combinations of tablets. I was listed (and had) an ablation in July this year some 11 months after it all started(!) and then gradually started stopping the meds. Sadly, it reared its head and I had a further DC cardioversion and the bisoprolol increased to 5mg. Am now waiting my 2nd ablation in 2 weeks time!

Hi Sherrill,

My goodness, you have been through the wars, all I can do is send hugs really and hope that your doctors can sort out some solutions for you. Have you seen an EP (electrophysiologist)? They are the experts in AF and you have a right to see one apparently - with your heart issues a real expert would be best placed to sort things out for you. Fingers crossed for some better luck down the line!

Lis

Sherrill profile image
Sherrill

Hi Lis

Thanks for your reply. I have looked into EP as I didn't really know what it is. It appears I saw an EP at Papworth in the early days when I was first diagnosed with Total Heart Block and had the pacemaker inserted. Ive not seen one since then.

I am due to see my GP on Friday so will talk to him to see if he thinks I sould see the EP again. He may want to wait for the results of the 24 hour monitor, although I am not holding out much hope that it will show much typically yesterday was a fairly good day unlike Saturday when I felt awful.

I will push the dr though as my symptoms look very much like worsening of the AF. Palpitations , tight chested and very tired with no energy which is not like me at all. I am not on any of the main drugs for AF I was on Amiadaroe but have been taken off it due to thyroid problems.

Thanks for your advise it is much appreciated

jeanjeannie50 profile image
jeanjeannie50

Hi Sherrill and welcome to our forum. How was your heart when you wore the 24hr monitor? Mine is usual absolutely perfect for the time worn and then all hell let loose once it's removed. Sods law I guess. How are you now?

Jean

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