3TIAs previous to diagnosis. Anticoagulants and flecanide until flec caused elongation of PR interval.
Ablation 1 partially successful
Ablation 2 abandoned due to rare complication
Controlled AF with Sotalol ( 120 mg x2) for quite a few years but ultimately scheduled by my EP for P and A.
Pacemaker leads couldn’t be inserted in usual side due to shoulder injury and crushed veins so abandoned.
New EP said he would attempt another ablation. In the event had 2 but no more possible due to extensive scarring. Fortunately AF temporarily gone, sotalol reduced and I had a wonderful year in NSR.
Recently following traumatic event and a virus it returned very dramatically . Sotalol increased and now just about under control but time to talk about P and A again so rang my nurse who said my EP recommended I now went on amiodorone for a period of 2 years then he would do P and A. I was very upset at this as I am scared of amio and felt I had no voice in the matter.
I didn’t think it was fair to keep having 3 way conversation with nurse EP and myself so I
Scheduled private appointment with my ( up to now)lovely) EP to discuss further. That was yesterday and this was the outcome:
I can choose what happens next. There are 2 choices.
1. Stay on sotalol till not working at all then opt to try amiodorone low dose with lots of check ups on lungs eyes thyroid skin. At any time I am not happy I can opt for pace and ablate and the waiting list at present is around 7 months. I am not to worry about my crushed veins as there are ways and means he says. If amiodorone suits me and causes no problems I can stay on this for as long as I want.
2. opt straight for the pace and ablate and go straight on the waiting list or wait till sotalol not working at all.
The choice is mine but he would recommend trying amiodorone first because:
P and A is very final ( can’t be reversed)
Following P and A Cardiac outputs is usually reduced by 10-20% and a small minority of patients can’t deal with this although most just get on with life accepting they are a bit more tired( his words). Those that manage well are usually those who are very symptomatic in AF and who know they have no other option. For example there would be no point risking reduced cardiac output if your rate in AF was below 100bpm ( my words).
Now to my decision!
I had expected to want to go along with P and A to draw a line under the whole thing but now I really do have to consider everything a little more carefully so as yet no decision reached.
I would welcome thoughts and opinions from you lot as you have all been on this journey with me and I hope that this incredibly long post is not too boring and that it may be of interest to some in the same position as me.
I am very glad I went ahead with my private appointment as I now have the big picture which is all I wanted.
If you have read to here go get your drink of choice, you deserve a medal!
Best wishes
Jane x
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dedeottie
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I would want to have tried every tablet possible before opting for Amiodarone, have you done that? People are speaking well lately of Diltiazem. After having tried every one, I would then chose Amiodarone and lastly pace and ablate.
How are you now on Sotalol? Once over your virus and traumatic event you may be ok with it, what do you think?
Hi Jean and thank you. I have had most drugs some of which I can’t have because of a heart block ( 1st degree at present but have to be careful hence can’t have more than 2.5 of bisoprolol also my BP is a low normal (95/67 today) which also limits the use of some beta blockers. Groan…. Iam on a high dose of sotalol and this seems to to be a good choice as far as my PR interval is concerned. I am happy to stay on this as long as it is giving even some help with AF. My EP thinks it won’t be long before it no longer works for me but points out that no one really knows. I will enquire re diltiazem though.
Your line of thinking actually mirrors my instincts right now. I will be more likely to mentally accept and deal with any lack of energy following pace and ablate if I know I have exhausted all the possibilities.
I’m sorry to hear of your predicament, what a rotten choice to have to make. As I understand it, although they would no doubt monitor you closely, I believe it takes some weeks for Amioderone to leave the body if symptoms did start to appear. As Jean says, if it were me, I would make absolutely sure all other drugs have been exhausted first. What about Dronedarone, Amioderone’s less toxic stablemate? I gather that it doesn’t contain the iodine element that Amioderone has, making it less damaging to other organs,. Maybe that would be worth a consideration.
So sorry to hear this, as you may remember, faced with a similar choice I chose P&A but the PM worked so well that never did have the AV node ablation.
Having said that my husband has done well on Amiodarone but there have been consequences.
If the waiting list is 7 months then you could opt to go on the waiting list, staying on the Sotolol in the meantime?
There is no ideal solution so maybe do a thought experiment and imagine the different options and see how you feel? Faced with this type of dilemma I found my body is intuitive and the answer comes instantly.
Thank you for your thoughts CDreamer, I do find that helpful. I am a believer in ‘ playing things forward’ so will do that with both scenarios. I really appreciate your help. X
I had the choice between the pace and ablate and going on amioderone also when nothing would stop the tachycardia…..I already did have the PM inserted after the 3rd failed ablation but back to the point. I actually was all set to go for the drug and was admitted to hospital for a three day observation when they were about to start me on it. At the very last moment when they brought in the drug to start it…..I said no. I had a nurse actually praying with me to know what to do I was so afraid of making the wrong decision.
The heart drugs including diitizam and fkecanide made me horribly sick to point of literally not being able to eat . After going off those drugs I got back my appetite. I’m extremely sensitive to medication. Many people can tolerate these toxic medications. My thinking at the time I stopped the amidodorinrcwas this. If I can’t tolerate those medications and all the side effects what am I thinking going on this the most toxic?! So at the final moment I opted for the ablate and am happy I did. I notice no difference whatsoever in my fatigue or stamina. The fatigue I feel is from the afib and that was even worse before the ablate. I work out at gym with weights and elevated treadmill walk 5 times a week. I no longer have to worry about heart medication and what they are doing to my body or feeling any tachycardia or afib. My heart is disconnected and there is far less stress on the heart because of it. It was the right decision for sure.
This is not easy decision I totally understand but think about the probability of getting the P&A anyway in future and having had to gone on amioderone first and the risk that poses. I think because I already had the PM my decision may have been a tiny bit easier but rest assured it was a very hard decision to make.
Thanks for this. The vision of you sitting in hospital changing your mind at the last moment, made me laugh…. This will be me exactly! Will PM you later. X
Really sorry to hear this. Not an easy decision to make by any means. Reading the responses you have had so far there are some good things to ask or try. Even if you are not able to tolerate other drugs suggested at least it won’t be for the want of trying and may help to make that final decision of P&A or not, easier. I really hope you find the answer soon that you are happy with and can move forward. Take care.
Hello dedeottie and sorry to hear you’ve had such a difficult journey with AF treatment. I was on amiodorone for a few months prior to having a (successful for a week) CV as it can help the procedure in the case of persistent AF. I actually miss amiodorone as it definitely helped steady the AF and I was less breathless on hills which is my worst symptom apart from lying awake with a heart that feels wrong! I’m not sure I’d have agreed to it long term though. It’s good for those who stay free of the worst side effects.
My EP has now put me on digoxin (foxglove derivative) while on the long waiting list for a first ablation. I can’t take meds that reduce blood pressure as mine is already a healthy low. It has definitely reduced my heart rate to a more sensible resting rate and is also said to provide a stronger beat.
I’m a believer in getting yourself on a waiting list before you’ve made your mind up. If you cancel in good time you’ll just shorten the list for everyone else. And you’ll have a breathing space to think it through. Also a second opinion if there’s complex issues might be worth getting- could you insist on an appointment with your NHS cardio EP given your history?
Wishing you plenty of breaks from all of this, mega distractions, good company and happy times!
Thank you. It was actually my NHS consultant that I paid to see privately. An appointment was not on offer under the NHS just messages passed between my arrhythmia nurse , him and me. Pressures of time! He does private work on alternate Saturday mornings at the Spire. I had all the time I needed without pressure so it was worth the £175 plus &40 for an ecg but am aware that not everyone can afford to do that. I am actually very happy with him and do trust his opinion which is making my decision even harder 😂
Ah, same situation here - my EP working across both sectors and he’s brilliant. I paid for 2 appts and one of the CVs. I do feel lucky in that respect though stopping short at 20 k for an ablation - I’ll probably need 2 anyway!! 😅
Hi. What a dilemma. I’m in AF most of the time and saw an EP privately. He wants to give me amiodarone then do a cardio version. My instinct is to keep well away from this very toxic drug particularly since the EP nurse said they would be starting with a high dose to load up. I have read somewhere that lower doses are potentially worth considering but that’s early research I think. I am not suitable for Soltalol so I’m just on beta blockers. 3.75mgs bisoprolol in the morning and 1.25 at night. My choice was to split the 5mg dose as af caused trouble around 5 am when it was paroxysmal. I now discover on a ct scan that I have a problem with my lungs and my heart is enlarged so back to see cardiologist soon and lung specialist to exclude something nasty by doing a bronchoscopy. If only the cardiologist would take more time to properly check more thoroughly and then help me to make a decision I would go into any treatment with confidence. Good luck with your decision.
Hi Jane, thank you for your post, I read to the end and didn’t find it boring at at, it is interesting and informative. My gut feeling is to try everything first with regular monitoring to ensure you are tolerating the medications. But, would depend on your present Cardiac output, if it is already low then going for a Pand A now, would make sense to avoid the medication side affects. I have no personal experience on this to guide you. Good luck, I am sure you will make the right choice for you.
Hi . Thanks for replying. Part of the problem is that when in AF my cardiac output is dire and quite frankly I would do/ take anything to improve things. However when the sotolol is working I am 100% fit and healthy and lead a very active outdoor life so then a reduced output sounds not great !
All these responses are fab and really helping to get different perspectives.
I can definitely understand you not wanting to permanently reduce your cardiac output. Like you when I am not in AF I am physically active, walking, bike riding, badminton, these are not things I would want to give up. When in AF I can’t walk up the slightest incline.
Low dose amiodarone, without its well-known potential for toxic side effects, which are now always carefully monitored, seems a rather good heart drug as it is not pro-arrhythmic and is highly effective:
Thanks Steve. That article is really helpful. My EP says that after a loading dose I would be on the lowest possible dose 200mg or less so that is heartening. X
You have certainly been on a long journey with your AF and having been on a similar one myself I would say that the advice of your private consultant to go on the waiting list for P&A and try Ameodaran (excuse spelling) in the meantime and see how you get on. You could then opt out of the procedure if the drug worked for you. I deliberated for several years before driven to take the decision and am now so glad I did as I have had no AF that I was aware of since I went for it. I could not believe that the procedure would stop the dreadful symptoms and pain I had been experiencing but it has. I realise I am considerably older than you but its great to be off all meds except for BP and Anticoagulant. Best wishes to you whatever way you go.😍
Hi Jane, that is a difficult one! I reread your post because it’s such an important question and I couldn’t make up my mind either….. then something jumped out at me - the ‘recent traumatic event and virus’. So, I have been in the same situation this year, first my husband died in a horrible way, then I decided to move to a flat and the move was chaotic and stressful and during the very hot weather and it will be no surprise that I went into AF followed by heart failure and had a painful episode of bowel problems of some sort. The cardiologist I saw said I would have to take more diltiazem, more BP meds, possibly Amiodarone, try a cardioversion…..but two months later I am fine - NSR, normal BP, and getting my energy back. You obviously have more serious problems than I do but I think, give it a bit of time. Keep taking Sotolol , go on the P&A waiting list, but don’t rule out taking Amiodarone if the Sotolol doesn’t work any more. At the time when I was going in and out of AF for weeks I would have jumped at the P&A option but now I wouldn’t. I’m also thinking of your age. I was aware of the reduced cardiac output - your heart rate naturally goes up and down all the time in response to circumstances and that’s a good thing if it’s not extreme. At 67 that’s a long time with a pacemaker controlling the rate.
Bufferfly, I had no idea what a terrible time you were having. I am so sorry to hear about your husband. Just that alone is enough to affect health let alone the traumas of moving as well. I am so glad to hear that your AF at least is back under control. Long May it last.
Your thinking very much mirrors my own at present although I do keep changing my mind! The AF is back more or less under control at present and so staying on sotalol and ‘ holding my nerve’ when I have blips, seems like a good idea for now. I feel that I do at least now have the big picture so theoretically I can be ready to give a decision when I need to.
I’m pretty much in the same boat as you but just starting out on sotalol … after trying every drug in the pharmacopoeia and five ablations along with multiple cardioversions and every one of the options failing eventually.
You have essentially the same options offered me. My EP team is hopeful that sotalol will carry me in NSR until I hit 75 (just five years away) or preferably 80 accepting that I can’t maintain an active farming lifestyle anymore (fat chance). However, the sixth ablation or a pace&ablate are my next options. They just don’t want to “go nuclear” with the P&A until I’ve convinced myself to climb off my tractor and into my easy chair.
Hopefully that helps knowing you have the standard options available and are not alone on the journey.
I understand your dilemma. AF diagnosed at 60yrs and very symptomatic from the start. Amioderone for 6 and half yrs which was closely monitored with the only side effect being sun sensitivity, which was pretty extreme. Unfortunately it stopped working and i then tried various drugs including Diltiazem, digoxin, bisoprolol, veramepril etc, all of which made me feel dreadful.
My EP would have liked me to get to 70yrs I think but last year aged 68, I opted for the pace and ablate and haven't really looked back.
No my heart drugs, just apixaban and no feeling of being in AF, though i know i still am.
Tough choice and not sure this will help but good luck anyway.
Hi. I have followed your journey so know that you have also had a tough ride. It is good to hear that amiodorone was ok for you. Although I am scared of the big side effects such as pulmonary toxicity, it is probably photosensitivity that concerns me most as I have lived my whole life outdoors and am not about the alter that now. I am happy to cover up and wear high factor cream but would give up amiodorone straight away if I couldn’t be outdoors. How did the photosensitivity affect your skin?
Hi Jane. Yes it was tough not being able to enjoy the sun I must admit. In mycearly life I was a competitive swimmer and have always enjoyed sea,lake and river swimming. Although originally a Londoner,I actually now live on the coast but also have travelled abroad pretty extensively, always enjoying the sun. With the amioderone I kept covered and slathered in factor 50. It was so easy to burn, laying in the sun for any amount of time was out of the question. On one occasion, i was on Tenerife in some winter sun and accidently fell asleep just fir 20 mins in the sun. My face got sunburnt on one side and swelled up. I had to find a doctor who gave me a set of steroid injections!
As far as i know, not everyone gets the sun sensitivity side effect but then some get even worse. All i will say is that it was a drug that worked well for me for quite a few years and i was prepared to put up with the 3 monthly blood tests etc. Its also very nice now to be almost drug free and to be able to enjoy the sun again, ive just got back from 6weeks in france, which has been very hot . Its definitely a case of weighing different factors up isnt it.
Hi, dedeottie. Many people have been on amiodarone long-term very successfully and with minimal if any side effects, but it all depends on the dosage. What dose does your dr. plan to start you on? My mother is one who has taken amio at 100-200 mg per day for 24 YEARS, has routine tests, and has never had a single side effect or bad test result. (She has also not had another AF episode during that time, & she's one whose AF is very symptomatic.) Many good wishes as you make your decision.
I am so sorry to hear this very difficult situation for you Only you can decide really, one thought came to mind which might or might not help, the longer you leave an irreversible procedure might allow time for newer solutions to come along.
It's such a dilemma when we are told it's up to us to decide! I've often thought that in the event of other heart related problems ,such as heart attacks, blocked arteries etc,we don't expect to be consulted about what they should do!It's not boring to read your story,and may help others too.
Good luck friend and hope you getca good outcome whatever you decide.
I’m still a bit of a newbie diagnosed at 62 earlier this year, with very symptomatic AFib (HR 165) but ended up with a cardio version and put on amiodorone in Spain last month. Not a good experience. I was only on amiodorone for 7 weeks but it made me feel utterly awful and I begged to come off it. I felt my QOL was wrecked, I am normally a very fit and healthy person.
Personally I’m now trying To do everything I can myself to prevent myself from going back into AF . Eating very clean, no alcahol, excercise daily, stay hydrated, plus magnesium etc . I’m sure you’ve tried everything you can before now.
It’s a tough decision to make but you should trust your intuition and as another member said, how does your body feel when you visualise through the various options?
Finally will delaying the pace and ablate have any impact on the chance of its success? That might too be worth thinking about
It's my understanding, from reading, that the best method is to USE MEDS, if they are working or mostly working for you. Once you have exhausted all meds then do the P & A as a last step and watchman as a last step as well.
I have heard that amiodorone can cause various side effects but if nothing else works then it might be worth a try. My dad and mom have both been on amiodorone at some point. My mom has had cardioversions, ablations and a pace maker for over 10 years and got her second pacemaker, she is now 87. If it were me and I was comfortable, I would continue with the Sotalol since it sounds like you said it's almost under control and maybe try a little longer and see if you can get things under control. Also remember to reduce stress and watch foods and drink plenty of H20. I have PAC's and so far I don't have AF but I try to eat right and am hoping that meds will keep working and I won't progress, knock on wood, to AF. My mom got on Sotalol many many years ago....probably like 30 years ago approx. Hope this helps you some on your choices!!
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