Back in May I was discharged by my EP as I didn’t want an ablation. Have had more AF episodes recently so asked Dr (in a telephone consultation) if I could change from Flecainide to Propafanone! He said he’d send me back to hospital! Cardiologist sent me to EP who has sent me to Arrythmia nurse!!
So, asked for more Flecainide just to have something to hand! Prescription clerk sent me to Dr, Dr sent me to in house pharmacist! All by e-consult!
Some days you just want to scream very very loudly 😱😱
I'm curious as to why you prefer to take drugs which obviously are not helping than take the risk of having your symptoms stopped by ablation? OK we are all different but it would be interesting to understand this.
I admit that fifteen years ago when first told about ablation the idea did not apeal to me but within six months as my condition progressed (and it almost always will) I was back begging them to do it. There should be far more knowledge around about ablation these days which I would have thought would have helped people make the right choices. I know that many people have their symptoms controlled with drugs and as all treatment is only ever about quality of life that is fine but if drugs don't work then there is this alternative.
It’s the thought of numerous ablations that bothers me. One - done and dusted, 3,4,5 with all their attendant rest periods. Perhaps not! At 76 I want to get on with life not take to my sofa. Other than when going into an episode my hr is never over 90 and hopefully when the ends join up I’ll be fine.
Hope you are now too.
Di
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Hello Di, I can only comment on my own personal experience but recovery was not onerous for both of my ablations. The day I left hospital after the first, with the approval of the EP I attended the Support Group meeting at Epsom hospital but I was told not to climb stairs or lift anything heavier than a cup of coffee. Within a week, I felt absolutely fine and I had to force myself to abide by the rules. Within six weeks, we spent a month in the States avoiding any luggage handling. Apart from a few days getting over the effects of the general anaesthetic, recovery from the second was very similar. Of course care has to be taken and any form of extreme activity is to be avoided for as long as possible but in my case, the benefits far outweighed any inconvenience. I was 70 and 72 and age is, of course a factor, but we have members here and at our Support Group older than you who have had ablations and they all seem fine.....but very much a personal decision...😉
The first was a cryoablation which is often tried first because it is a slightly quicker procedure in that a balloon is expanded to freeze the tissue around the pulmonary veins. Unfortunately, not all pulmonary veins are regular in shape so it is sometimes necessary for a second procedure to treat (burn) the tissue previously missed. I had a couple of episodes within the first 3 to 6 months which is not unusual but after a year or so I had more and my EP did indicate that a second one was on the cards.......
Checkout two posts before this one.....Beancounter’s Natter ‘n Nosh etc etc.....
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I have been put forward for an ablation; I still haven’t received the appointment date. Like you, I am very doubtful about it. The reasons:
1. Very often the first procedure doesn’t work (around 40% of the time) and you wind up having several, each time with the attendant risk (see below).
2. Symptoms may be made worse, not better, by the procedure.
3. The risks are not inconsiderable: 1 in 200 of having a stroke, 1 in 20 of having a major complication etc..
4. The procedure itself is complex and sounds unpleasant.
5. A fairly stiff dose of radiation is involved.
Of course, one has to consider what is likely to happen if one *doesn’t* have the procedure, but I can understand anyone not wanting to have it.
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I just wish someone would listen to me. When I ask to change from Flecainide I’m told I’ve tried every tablet!! No wonder my surgery has come 6772 out of 6789 xx
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A nurse told me that they often switched back and forth between alternative meds -a medicine that has lost it’s efficacy for you may become effective again after an interval.
Sadly that is incorrect. Since the drugs are not like narcotics where the body has a receptor for it the drug itself can not become ineffective. It is the AF which progresses. This is a common misconception which I had years ago until "put right" by a specialist.
Would just like to try Propafanone and Soltalol as Flecainide works sometimes and not others. Just wish someone would make a decision rather than passing the buck. Quite happy with Nebivolol, calcium channel blockers make me fill with fluid.
I think propafenone has to be prescribed by a cardiologist and I got the impression cardiologists think Flecainide is superior. Also I think BobD said propafenone has a beta blocking element as well as antiarrhythmic so that might affect the Nebivolol? You didn't mean *and* sotalol did you? It's all very complicated 🙁 My cardiologist seems to have dumped me because I didn't want to take Bisoprolol, can't take medications, another ablation not advised and a pacemaker not needed yet so I guess nothing more to say really......Enjoy your holiday, I envy you still having a van X
Yes, the docs seem to prefer Flecainide but Propafenone works better for me. My EP prescribes it for me after I insisted a few times to him Flec was not doing the trick.
My EP prefers flecanide but I have found propafenone works better for me. Second ablation sceduled next month. I was free from afib and aad for 14 months
My route to ablation also. Took me 20 months for my progression and new drugs with side effects to u-turn on no ablation decision!
I’ve just got that van, off Wednesday! Busy,busy,busy! Just wish so many people hadn’t got slopey shoulders. Certainly wouldn’t have ablation with that EP now. xx
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We are off the Wednesday after.....the plan is Denmark.....
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Very envious but think we’ll stick to the U.K. this year in case bits fall off!!🤣xx
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You could go to Germany......😂👍😉
Done that, been there with the last one! New double-glazed can windows 🤣xx
It's like no one wants to make a decision. I don't have any of this trouble.i went to my Doctor and told him I had taken my all my PIP he just gave me another prescription. He said just take up to 300 mg of flecanide when I am having a turn. You wil" have to persevere someone will let you have it. X
I can’t remember the last time I actually saw a Dr!!! xx
Hylda a ablation is a real simple quick procedure. I am 72 and had it done. No more racing heart, no more dizziness, no more feeling sick either from the afib or mediation. But everyone is different but give it a thought. I remember how scared I was but it was not a bad experience at all, and the recovery period was a few days to where I was living a pretty normal life. Still working for me after 5 years. Hope you get it controlled either way you choose, What a nasty monster this afib is.
Many still go into afib occasionaly or more than before
It is NOT A CURE
It can be, if all goes exactly right, under the right conditions and some people will have improvement. You are very lucky and very fortunate,
However, lets not minimizie this.
Every time this is done, the heart is scarred and a bit of controlled damage happens. doing a few of these leaves your heart with piles of scar tissue.
I'm with you Hylda. Everyone I know who has had an ablation has had at least 2 more. Does an ablation mean no more drugs. No! I am always looking for other ways. I also empathise with you regarding the to-ing and fro-ing through the medics.
I too have not just avoided ablation, and have told all the doctors Ive seen about my afib, that I dont want one. After talking with my new EP, and discussing this at length with pros and cons, I agreed to do it. Well 2 weeks before, I cancelled the surgery. Reasons?
1. There is ONLY a 60% chance it will be effective (stop the afib)
2. Risk of complications, infections is high not to mention related instument damage, bleeding... OMG the list is endless
3. The stress and anxiety alone just thinking of what they plan to do for surgery, will and does set off my afib. My first afib was diagnosed the day before a scheduled knee surgery. Anticipatory anxiety = Afib
4. My EP, that I really like said, If the "first" one does not work, he does not do a 2nd. He refers me to the thorasic surgeon that specializes in a mini-maze. His success rate is 80% but its a 6 month recovery since they make 3 holes between my ribs on both of my sides, collaps my lungs to reach my heart. In ICU for a few day, on morphine...
So there ya have My personal reasons. The meds they have given me have not worked, and the last one tried was just this past week. --propafenone, this had me in afib every single day for 5 days just a lower HR. I had to stop taking it on the 4th. day. (My afib is 2-3x a week, untreated)
After six years of AF, I know drugs can make it worse and my cause is issues with my back. I have tried all kinds of things to fix my back and am making progress but it is slow. And there is no cookie cutter solution. So Bambi65, if you have not paid attention to the feeling in your neck or back before your AF episodes, I suggest that you do and you may find a correlation. I know if I get a certain discomfort at T5, if I don't do some things that I have learned, AF will start shortly. Often when I lay in bed or sit in a chair with pressure on my back and the feeling is there, AF starts in 30 seconds. Often I can stop it but I cannot always keep it stopped. Once my back gets sorted, the AF stops and my heart behaves until the feeling returns and the battle begins again. Certain postures are a sure trigger. Being on the computer or staying too long using devices is never good.
I have no back pain or any discomfort anywhere in my back. My afib starts without any paticular reason or cause. Ive been documenting daily over the last couple of months to see if there is anything that I am doing to set it off;, eating, drinking, amount of sleeping, getting excited or upset, just about everything each day. Unfortunately, I have found Nothing consistant, which really sucks! But I keep trying to find something, anything that would be consistant. Im glad you have found your consistant trigger. Your fortunate
Sorry to hear you are having issues getting the meds you need. It can be so difficult getting the best support and through the medical system, it can be a nightmare. I hope you enjoy your time on holiday and things are soon sorted for you on the meds front. X
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Flecainide as PIP
Weaning off Flecainide
Ablation was a bust
Weekly episodes, trigger ideas?
