To take Amioderone or not

I have had. Recent app with my EP consultant at Liverpool heart Hosp,

Not a trip for the feignt hearted lol

We had a real long conversation, and the end result was one of three options,

Another ablation after 2 failures, and two cardio conversions during the last one,

His opinion was that since my AF is in the left atrium, it is harder to put right,

The second was after an oncologist consultation to check my thyroid and kidneys as they are damaged from previous Amioderone treatment , and if he thinks it's safe to go back onto this highly toxic drug,

This was my easy option.. coward that I am

I have an app for this 15 th November,

The last is to have a pacemaker, which he described in great detail, how it

Operates, a small procedure one catheter to kill of all nerve endings in the heart, then you are totally reliant on the pacemaker.. he was truly honest, and said some people either love them or hate them, as they are set at a constant HR .. my normal HR is quite low, around 56- 60 .. mostly, except when in AF, then I take a PIP

Half a sotolol. To bring HR down,

I get frequent bouts of AF , to my mind mostly stress induced.

And have had enough, I'm beginning to think I should have gone for the pacemaker..end of..

Instead of going down the Amioderone road..

main problem being getting L/ pool hosp, I had to pay £145 last trip, as I hate driving

Long distance these days.. and no one in my family would help out.

They have virtually thrown my husband who has advanced Parkinson's on the scrap heap..

In tears writing this.. as I do not understand why they are like this.

Sorry long and so many questions

I'm really going through it right now,

🌧🙁

14 Replies

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  • Oh my goodness, so much to deal with as if A.F. is nt enough. Have you got a trusted friend that you could take with and share some of your worries with ?

    I share your worries and have often pondered what I would do if I was offered this medication as some of the side effects are infact inherited disease traits in my family.

    In my particular case i think I would accept it in the very short term if it was to fascillitate an ablation or cardioversion but absolutely not long term.

    I will be interested to hear what they say about the pacemaker as I didnt realise it had to be set at a constant rate, i thought it may be exercise sensitive.

    Good luck with everything and do let us know how you get on. I will be thinking of you.

    Best wishes

    Jane x

  • Good Morning Rosey - I really feel for you as I'm sure in your position I would find it difficult to make the decision that you are faced with. Lets hope that someone on this forum who has had a pace and ablate will respond. First let me say that I too usually have cardioversions when I have an ablation (have had three), so I would guess having them at that time is perhaps a normal occurrence.

    I knew someone who took Amiodarone for about 8 years with no problems, other than a slight skin discolouration. No one had told him anything about the medication, he wasn't given any follow up checks, he wasn't one to read leaflets so he took these pills and carried on with his normal life. In your case where it has affected you in the past I can see why you are hesitant to start taking it again

    I took Amiodarone for several periods in the past and it mucked up my thyroid, still have checks now and my thyroid is gradually recovering. Have you ever taken Flecainide? For me it has been a wonder pill, controls my AF really well and I am once again able to live a fairly normal life.

    Getting older and being unwell isn't nice is it, but please don't think that the hospital has abandoned your husband with his Parkinsons. I think sometimes we get to a stage with an illness where we just have to accept what we have, that it can't be made better and have to take our medication and carry on as best we can. Hospitals do not have a magic wand and I believe will always do their best (sometimes with us reminding them that we need help of course). New procedures and cures are being discovered every day so please never give up hope.

    We care about you and your husband, we'll always be here for you and you know sometimes when I think of what I've learnt on this site it far supersedes any moral support I've had from the medical profession.

    Take care.

    Jean

  • Roseyuk . I wondered how you had managed with your appointment or if you had decided not to go as Shropshire to Liverpool is an awful traipse.

    About 3 years ago a lady saw my posts on here and, realising that I was heading for an ablation and that she lived about 10 miles away, contacted me privately. She came to see me. She had had an ablation at LHCH and eventually had a pacemaker fitted. She was a new woman. I often think of her because if my AF worsens then I will have to have a pacemaker.

    I know a lady who has had pacemakers for over20 years because her heart has long pauses between beats. She spends her winters in Cyprus and looks very fit to me.

    Jane and Jean have written lovely responses. We all care about you. Do please let us know how you are getting on.

  • Was it me Jenny?

  • Be interesting to know if you are the lady

    Jenny was telling me about 😊

    I have been having second thoughts about going back onto Amioderone to be honest,

    It means going through tests with an oncologist next month, and to be told, he would not recommend them at the end, maybe.

    I really.. am so confused, now as an ablation is the next alternative for me..

    I do not consider a pace maker as yet, as my AF attacks,

    Are apparent about every 3 weeks, sometimes less,

    Lasting several hours..

    Although my EP would gladly let me have one .

    Regards to you both 😊

  • Yes Rosey I was xx

  • Yes indeed it was and I will be forever grateful for your kindness.dd BStanding56

  • So sorry you are having such a distressing time, sometimes things seem to pile one on top of the other and the stress makes life much more difficult to cope with. I had cv's with both of my ablations so think that must be quite normal. How often are your AF episodes, are they too often to cope with? I have been put on Amioderone as had no choice as nothing else was working for me to stop persistent tachycardia. I have appointment in 3 months to see what else they can do for me and also fear that may suggest pace and ablate as my AF posed a real challenge during last ablation. There are others on this site who have had this done very successfully so would search pace and ablate in the search engine for more info regarding this. I wish you all the best with your decision.

    Brenda🐝

  • So sorry you are having such a bad time. Have you abandoned the idea of a third ablation? Many people on here have had three and it might work this time. In your position I would seriously consider it. Amiodrone has such serious side effects and pace and ablate is so final. Did your ep have any recommendations?

    Also have you sat down with family and discussed your health and the future. If they really won't help maybe look at moving so you and your husband are in a place where you can access health care more readily.

    Good luck 🍀

  • Amiodarone just messes with one's health. After I had problems with my thyroid my cardiologist took me off it, and said - never use it again . . . Many people have a third ablation, and it is less final than the pacemaker approach.

    Re the Parkinson's have you looked at books by Dr Geoffrey and Lucille Leader (see Amazon). They have been working with Parkinson's for many years, and are recommended for knowing what they are talking about, both from the medical and the nutritional and practical points of view.

    [Also, The Brain Bio Centre are knowledgeable and committed to helping people with various issues relating to mental health including Parkinson's, using nutrition, and will provide nutritional support via Skype if you want help from someone other than the doctors. Try Brain Bio Centre or Tel: 020 8332 9600: but how much a consultation would cost, I don't know]

  • Rosey

    You really are having a really bad time and many problems. I had written a response yesterday on my iPhone but it appears not to have been posted (having problems following software update).

    I can only support what the others have written. However I can also be of practical support re your train fare because when I read your post I realised that you may not know about the tips for rail travel these days (I am well versed on them).

    Obviously I don't know where exactly in Shropshire you are but you could be able to get ticket from £25 return at normal adult rates. With a Senior Railcard you get 33% off most journeys (sometimes not in rush hours of leaving from major towns, mainly in London and the South East - though there are exceptions). Senior cards cost £30 for a year and would have been cheaper for your last trip. Also often hospitals will adjust your appointment times so you can buy the off peak tickets (I know my hospital does).

    I am quite happy to help you by investigating the best options for ticket, rail card, etc and if you want to do this then just PM (private message) me.

  • I was in the same situation as you, I had had 2 unsuccessful Ablations, ans was then given the choice of another ablation or pacemaker ( I had started collapsing without warning) I opted for the pacemaker, best thing I did, I was told pacemaker would not stop the AF, but would stop me collapsing. I have been free of AF for three years now, my quality of life was pants before having pacemaker, I am tons better

  • Forgot to say I am still on a low dose of Amiodoryn but I am carefully monitored for thyroid and eye sight problems

  • Thank you BStanding

    Was at my GP today, and I explained my reluctance to go back to Amioderone, and she says she sees no reason to see an oncologist, first,

    Before I start again, as my EP wanted..

    she also confirmed what you say, that my thyroid would need closer monitoring.. and my kidneys ..

    We shall see, I am awaiting some blood work , before I see her again in two weeks..

    best wishes to you

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