I recently had a failed cardioversion and have seen my EP to speak about future treatment- my AF is unusual in as much I don’t get any palpitations or discomfort - just suffered with severe tiredness - my EP suggests a 2nd cardioversion aided by amiodorone one month before and 2 months after as a means to test if it’s the AF causing my tiredness - I am very reluctant to go on this drug and would prefer an ablation but my EP does not feel comfortable giving an ablation before I try the chemical cardioversion first - he needs to be sure it’s the AF causing this tiredness - I have asked for further options - any thoughts appreciated
Amiodorone : I recently had a failed... - Atrial Fibrillati...
Amiodorone
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Spinbiker
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Bearing in mind we always say that an ablation should only be undertaken to improve quality of life by controlling symptoms, I guess it’s reasonable for your EP to want to do everything he can to make sure that in your case, this will actually happen. As I’m sure you know, a failed cardioversion generally indicates that an ablation is unlikely to be successful, so it is good that he is prepared to try a second and use Amiodarone for a limited period, to give it a better chance of succeeding. I can fully understand your reluctance to take Amiodarone, but it will only be for a limited time so my personal view is you should follow the advice given.
Goosebumps• in reply to
Flapjack. Can you please be a little more precise in your use of language because your statement about a 'failed' cardioversion drives a knife into the hopes of those of us who have have had a first cardioversion that hasn't got us back to NSR for more than a few hours. Others might well view a few hours or even a few days only in NSR as a 'failed' cardioversion when we have been hopeful for a longer term success. But other advice on this site suggests that an ablation can be successful as long as the heart has shown a tendency to revert to NSR, no matter how short the time period. Now who do I believe? This site is about support, good information and encouragement, so we must be precise in defining what we mean please.
A 'failed cardioversion' is one where the heart has not returned to NSR for any time at all. Even if a cardioversion only lasts for a couple of minutes it demonstrates that it is possible to return the heart to NSR for longer by other means.
In my case I lasted 5 seconds in nsr after cardioversion
I failed my first 2 cardioversions, 1 month apart, then a month later (3rd one) on a different drug ( propafenone) it succeeded and I stayed in NSR for 20 months. I have had 15 successful ones in 5 1/2 years, but first 2 failed because of the particular drug they had me on at the time my EP thought. It was a cardiologist that did that first 3, not a EP Dr. I was really really down because I was in chronic afib 3 months and could not function in a uncontrollable high rate.
• in reply toGoosebumps
I try to be very precise about the language I use and in this case I was quoting exactly the words used by the originator (the 5th word to be precise). You are absolutely right when you say that a CV only needs to work for a short time for it to offer a glimmer of hope for the patient that further treatment might be suitable for further and hopefully more effective treatment ie an ablation. This is a point I have expressed more times in this forum than I can remember, but in the context of this post, the originator appears to have gone beyond that point so explaining what might have been, in my opinion, would be worthless and of no value to him.
So if it helps you, I am delighted to confirm that if you have had a cardioversion and it has reverted you back into sinus rhythm, even for a very short period, it is has not failed and there is a chance that you will respond well to further treatment but it may require more than one attempt.
I hope this reply helps you to appreciate that I do try to answer questions as accurately as I am able, bearing in mind I am not medically trained......
Goosebumps• in reply to
Many thanks for clarification. So strictly speaking Spinbikers CV didn't fail and he can take some comfort that an ablation might work. Us newbies need to get a handle on the terminology used by more experienced users so we don't frighten ourselves into making our mental state worse than it already is.
• in reply toGoosebumps
I appreciate your reply Goosebumps, but just to set the record straight, if you read Spinbikers response to Buffafly above, he says he was in NSR for just 5 seconds which indicates that the CV was in truth, a failure. However, his EP is suggesting a second attempt but this time using Amiodarone which is a powerful and successful rhythm drug before and after the procedure, to help sustain NSR for longer. If he decides to try that option, everyone here will be routing for a successful outcome.
Cardioversions generally have a very good outcome, but the period of success is extremely varied. Mine lasted just over a year, some much longer, but many unfortunately less, but as said, it is the fact that it worked at all which is all important.
We were all Newbies once, and most of us were s**t scared when we were first diagnosed, but over time things almost always improve as we acquire more knowledge and understanding of how to treat the condition......good luck, and pleased that we are still mates 😉
I agree with FlapJack.
There are many scare stories almost bordering hysteria about the evils of amiodarone that you'll read but it is a none invasive and short term treatment that if it works, is better than potentially opening up a can of worms inside the heart.
Scare stories, none invasive? Jed I could scream at you! At a meeting of we AFfers, out of around 20 people, 3 of us had had our thyroids damaged by taking Amiodarone and we now have to take pills for life to try and rectify that!
I can understand your concerns jeanjeannie50 but for the sake of accuracy I feel I must say that the folk who go on forums and to meetings are the ones who haven't had a straightforward journey, so the actual percentage of those who get thyroid damage is probably not as high as 3 in 20. All meds carry risks and I can't remember how long you were on amiodarone . I totally understand youur wish to highlight this issue.
I've only ever had one dose (intravenously). On the next occasion I ended up in Aand E I was seen by a chest physician who wouldn't use it because he had seen lung issues.
jeanjeannie50 I meant of course in terms of the treatment option offered by the EP in this case compared to ablation. In no way did I mean to belittle the effects people have had from this drug.
I suppose I and many others were lucky enough to have it IV and orally and not have any long term damage. We too were on it short term though.
Jed, I suffered being hypothyroid for several years, knew nothing about it and my GP kept quiet about how bad my thyroid was. To his defence I will say that he was hoping it would go back to normal once I stopped taking the Amiodarone. For years I had no energy, I would be out walking and then would suddenly feel so tired that I couldn't take another step. I wanted to collapse to the ground no matter where I was!
Then it got to the stage where I could dig about 5 trowels of earth in my garden and then was too exhausted to go on, I thought it was all part of AF. Every afternoon I was sleeping and I actually spoke on this website about moving house because I could no longer cope with my garden.
It wasn't until I saw a consultant who wasn't heart related and he did a blood test for my thyroid that my problem was exposed. He wrote to my GP saying I needed to go onto thyroid medication right away. That medication gave me back my life of sorts, but thyroid medication has a lot to be questioned about and I feel I will never again have the energy that I had before I took Amiodarone.
I never want anyone else to go through the extreme tiredness hell that I did. That's why I hate that drug so much, to me it's just not worth the risk. Yes, I understand that for some it doesn't appear to do any harm. I knew someone who was taking it for 8 years, but in that time his doctor offered him no blood tests whatsoever. He had never read the instruction leaflet and had no idea he had to keep out of the sun!
Thank goodness the members of this forum make people aware of all things good and bad related to AFand speak honestly of their experiences.
Jean
Thank you for everything you shared and that really sucks. My cardiologist told me what a horrible drug amiodarone was he admitted that to me and then yet several months later he put me on it I was on it for less than six months but I’m now so exhausted that I’m practically bedridden and I totally relate to what you said about having the sudden energy crashes you know I can be out riding my bike to the park and then suddenly everything drops and I turn into a zombie like all the energy is drained out of me.I’m a formerly robust person.
In this condition I also suffer from terrible debilitating depression and the combination is just well it’s been devastating.
I’m just curious how long you were on the amiodarone?
I hope you continue to heal and regain your strength as much as possible.
Much love and Merry Christmas
Acording to a major study thyroid problems were encountered in 4% of participants.
I know somebody who has been on Amiodarone for many years with no ill effects. As with everything people react differently to one another.
Peter
I know of a family member who was taking for many years with no apparent side affects and has just died of multiple organ cancer due to Amiodarone.
Jesus. I’m so sorry.
Hi. I was on Amioderone for six years and had little or no problems associated with it. It was a power of good for me.
Phil
I would most certainly try chemical cardioversion first. Amiodarone is only for a short while so not necessary to get too hyped up about taking it.
I've taken it many times ...it has not always worked but when it has it was a lifeline.
Good luck to you !
Hi
There seem to be any amount of chemicals to deal withAF.
I have been on flecainide for years and the side effects are not good but better than PAF
I keep fit in other ways and eat a mainly vegan diet.....
Tiredness is a big question with AF.
I Have fybromyalgia and arthiritis which cause tiredness and weight probs also.
But then people with AF run marathons so its maybe a good mental attitude and for me weight loss......again......
I am constantly searching for the answer but we only have one life so get busy and have a good day everyday
Amazing how many people with AF have supposedly subsequently developed fibromyalgia or polymyalgia !!!!!
Basically incredibly painful joints and tiredness which goes with long term pain,
Is there a physical link or is it the side effects of drugs????
Some drugs are so new that they have little solid background reports.
I would be more inclined to look at what can provoke all three conditions . My money is on overexposure to Fluoroquinolone antibiotics. Hopefully now the EMA has recommended that these no longer be used for banal conditions such as uncomplicated UTI , sinusitis and bronchitis as they were throughout the 90s and noughties there will be less delayed reactions causing alI manner of symptoms that are lumped under fibromyalgia, chronic fatigue and ME.
I can only say that on increasing my Bisoprolol from 3.75 mg to 7.5 I suffered overwhelming tiredness and breathlessness. Unilaterally I reduced the dose to 5mg, and whilst I still suffer breathlessness when walking up hill I am no longer feeling so tired. The reduction has had no noticeable
effect on my heart rate and I still have permanent AF. The other effect the drug has on me is to give me sleep problems and bad dreams.
If you are on Amiodarone with no side effects then you are very very lucky. It was the most toxic drug that I have ever taken affecting my kidneys, liver and thyroid. That is not scare mongering. It is fact. I wish to heck that I had never been put on it.
Remember that we all react differently to drugs. As a teenager I tokk steroids as part of my chemo therapy for Hodgkins Lymphoma. I was told they would make me very tired. Completely the opposite happened. I have never been so hyper active in my life!
I hope we are not all going to fall out about this Amiodarone issue as this has to be taken in context. For sure some people have had bad experiences with this drug and others see it as a blessed relief, everyone has to research as much as they can taking into account our consultants recommendations. I was on this drug for about 4 months, I was very nervous taking it but at the time would accept anything that would give me back my life. It did restore me to sinus rhythm pre my last ablation and worked so well for me I considered not having the ablation but I did go ahead and was then taken off of it. Unfortunately I am still suffering Arrhythmia problems but that’s another conversation.
BrockLongwood
Isn’t it a shame that you refuse to take on board all the views other members have expressed about your attempts to undermine the forum. This has prompted the moderators of the forum to ban you time after time and for you to return using new names and then have the temerity to post about how unreasonable the Moderators have behaved against you.
Obviously I have reported your post, but because you have now implicated me, I have decided to make your reappearance public because the moderator’s are unlikely to be around over the weekend.
You are not medically trained and all you seem to want to do is encourage vulnerable folk to run headlong into having an ablation by making claims that it is a CURE, which of course it is not.
I would urge other members not to react and apologies to Spinbiker for impacting on his important post.....
Cookie24• in reply to
I think he is allowed to state his opinion. I think most members know this forum is not medical authority. I have found all varieties of comments helpful.
Apart from the categories of AF that we talk about, Paroxysmal, permanent etc. I wonder if there are different types of AF which affect people for different reasons. I live in South Africa, where because of the weather and various types of landscape, I suppose, extreme sports are very popular. My cardiologist told me, that his second largest group of people apart from the usual older folk and those with a familial disposition for AF, are triathletes an canoeists. My son is a competitive canoeist and over 10 years ago he was diagnosed with AF and had an ablation . He has regular check ups and has been told that he is cured and can carry on with all his sports, he canoes and runs and exercises with no problems and no medication, which for me begs the question 'Is there perhaps a curable sub-type of AF?
Buffafly• in reply to
Pity you couldn't resist then 🙄
My son was 15 at the time long distant runner for high school sports he passed out during a race taken by ambulance to a hospital it took several trips and some time to figure it out. We were lucky to live in the Cleveland Ohio area with all the different heart institutes here . This was little over 20 years ago ablations were somewhat new then and the learning curve was much broader at the time. He was eventually evaluated and had a ablation within 4 months he was back to running and other sports he then graduated then went on to the US Naval Academy were a high rate of physical activity is required. After graduation from the Academy then went on to serve his country is now in the Naval Reserves and to date no recurrence.
Spinbiker have a look at my posts on early cardiovascular detection. You may find something useful there in having a Sphygmocor test which will compare your test results with the same sex/healthy cohorts. It will also be able to look at your arteries and see how much plaque/fat you have when compared to the same sex/age cohort. It is a totally painless non invasive mode of testing.
Good luck, let me know how you get on,
M-G xx
🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀
Thanks for writing I will read up on this
I am in my late 60s and had my first cardioversion 4 years ago. I was ok for just over a year when I went back into AF. I then had an ablation followed by a cardioversion. When I questioned the consultant he agreed that the ablation itself hadn't worked. I stayed in sinus rhythm for just over two years and went back into AF in November. I saw my consultant last week and he has suggested I go on amiodarone long term but said i would need to have my liver and thryroid tested every six months because this drug can damage these organs and if they do, it is irreversible. Having come away and read up about it, I just don't feel happy being on this drug long term as the side effects are very worrying to me. He said my other options were a second ablation (70% success rate) or just living with AF and using medication to keep it in check as best I can. I really have no idea what to do at this moment in time. I am asking myself: do I try a second ablation? If the first one was unsuccessful, will the second one work? What damage could this second ablation do to my heart? I am seeing the consultant again in two weeks' time so I have time to think about it.
I have had three ablations, and now have been in sinus rhythm for almost eight months without an episode. In my case, I was told that it was in the six months persistent to my first ablation that my heart had remodeled. After my second ablation, I was told that I would have an 85% success rate which has turned out to be true for the third. And, I had to pay for these three ablations myself. Yes, I have had extensive ablation in my heart, but I am in sinus. You are lucky that you would not be paying for your second ablation should you choose that route.
I would suggest that the success of a second ablation would depend somewhat on the experience of your EP and how advanced the mapping system is to see the rogue signals. Plus, some areas may have re-connected and/or there may be new rogue signals that have surfaced. I would ask the questions what was ablated and what further may need to be ablated.
I did take amiodarone for a total of nine months, then asked to be taken off whereby I was switched to Flecainide. I am now on Propafenone.
How many months persistent were you for your first ablation?
After 2 ablations which only worked briefly I went into persistent AF and could not go up stairs or hills due to breathlessness.
Very reluctantly I went on Amiodarone for 4 months.Since stopping, I have now been AF free for 13 months but am aware it may not last. Before taking this drug and while taking it be diligent about having all the recommended tests.
Amio is one of the earliest anti-afib and successful drugs. I was on for Amio for two years after my second ablation after trying failed Tikosyn and Sotalol dosage loadings (prolonged my QT interval). Because of the toxic side effects of Amiodarone, most cardiologists now suggest short term use. I was on it for two years and it worked well and basically trained my heart how to function. Because of the toxic effects I had blood work to check thyroid, liver and kidney function, as well a a chest xray to check for lung scarring every three months. Off the drug for two years now and I have occasional afib, use a pill-in-a-pocket regimen if needed and have not had to be cardioverted in years and no ablation on the horizon.
Interested to know what your pill in a pocket regimen is. I was on Amiodarone for a year (no side effects) and was AF free, but three months after stopping I am now suffering from occasional bouts of AF but almost daily ectopics!
At one point I was getting cardioverted every month. Ablation doc wanted to do another ablation, but my cardiologist was worried about the amount of anesthesia I was having with three ablations in 18 months. My PIP regimen is if I don't convert mback within an hour and my rate is around 150.
Step 1. .50 zanax to knock back anxiety. If that doesn't work;
Step 2. 1/2 of 25 mg metoprolol tartrate;
Step3. If I don't don't convert to NSR within five minutes, other half of metoprolol.
Step 4. If that doesn't work, 60 mg diltiazem.
I rarely go to step four.
Sometimes your diet will trigger heart problems such as afib. Try the following - it works for me and lots of others:
-----------------------------
After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer (this is why all doctors agree that afib gets worse as you get older). If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate (afternoon) exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??
I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas, Thyroid (sends signals to the heart to increase speed or strength of beat), Adrenal Gland (sends signals to increase heart rate), Sympathetic Nerve (increases heart rate) or Vagus Nerve (decreases heart rate), Hypothalamus Gland or others - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.
Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer
PS – there is a study backing up this data you can view at:
https//cardiab.biomedcentral.com/a...
How much sugar do you need to stop your afib? The answer is about 1/2 of what your daily sugar limit (threshold) is. My sugar threshold is about 80 grams a day right now. So if I go over that (and it's sooooo easy to do) my heart will start to afib. Then if I cut back to about 40-45 grams of sugar for one or two days, then the heart goes back to normal rhythm and stays there until I exceed my daily threshold of sugar again. (moderate exercise will shorten that time frame). I have gone 30 days under my sugar threshold with no afib once just to prove it is the sugar. And I have consumed my daily limit of sugar every day after going into afib and it stayed in afib for a week - just to prove that worked. So - as long as you know what your sugar threshold is you can control it, but that takes several weeks of experimenting to figure out. I use the following WEB site to know how much sugar is in different foods:
fatsecret.com/calories-nutr....
jeanjeannie50• in reply to
Rick - Your fatsecret link is not working
Eric48• in reply to
I think sugar a dehydration may well be my triggers. I had a lot of AF last summer, I know I was drinking more than I am now, but I am having far fewer episodes at the moment. I’ve also suspected sugar to be a trigger as I am a bit of a binge sweet eater!
I have had 9 cardio versions and 3 Ablations and I am sorry to say I am still in AF. However as my many Consultants and doctors state "I am Complicated!" Mainly due to many comorbidities and IPAH throwing a spanner in the works.
I hope you get sorted soon.
sounds like my case (slightly)
I was put on amiodorone and had a second cardiaversion in September
I was on amioderone in 2004 and only had mild sunburn
im still on the anti a rhythmic and feel wonderful (compared to my constant napping pre zap
I have been taking amiodarone for 30 days with no side effects at all. Might be worth a try.
I had a cardioversion which lasted just under a year and then in May this year went back into permanent AF again. The tiredness and breathlessness is all part of my AF - I don't get this at any other time and no medication seems to stop this. MY worst time is at night when I fight to find a position to sleep in where I can breathe easily. This stopped for the 22 months I was in NSR after my first cardioversion. It was the first symptom I noticed that made me think I was back in AF. I came downstairs after a bad night and checked on my heart monitor and yes back in AF. Funnily enough this was only about 3 months after being passed back into the care of my GP from the cardio department and just a few days before a cardio checkup with my GP. I was also waiting for a total knee replacement (TKR). So I asked the cardio dept if they could "fast-track" me for a cardioversion before my TKR. They did this with the help of amiodorone taken for 6 weeks prior to the CV and 6 weeks post CV. I had some thyroid problems at the blood test when they took me off amiodorone - whether they would have kept me on amiodorone had the tests been OK I don't know but I was told I would only be on for 3 months so think not. Other than the thyroid showing on the blood test I actually had no other side effect from taking the amiodorone at all and the thyroid change that showed up on the blood test had not given me any symptoms. I have just had a blood test again to see how the thyroid count is now and will hopefully get the result tomorrow. Again I have no symptoms from this change in thyroid count and presume that as I have been off amiodorone for 3 months it is getting back to normal as I was told it would. Unfortunately just 3 weeks after being taken of the amiodorone I went back into AF I think this was from the effects of the gruelling physio to get my new knee working - believe me it is very painful and hard. I have just been to see my EP who has put me forward for an ablation which should take place in 3 months time and in the meantime I am to go on a healthy heart course run by his specialist nurses. By the time I had my first CV I had eventually found that low dose digoxin was the best medication for me - having tried bisoprolol at varying doses - which made my fatigue and breathlessness worse and various other combinations of drugs I cannot remember the name of which either made my symptoms worse or had little or no effect on it. I went back on low dose digoxin after I went back into AF after first CV but have not been put back on it this time and the EP said last week that he wanted me to just stay on the apixaban until my ablation. Thankfully my knee is now getting better - I had my TKR on August 30th and went back into AF mid October last year. I am quite happy to wait another 3 months for my ablation as still struggling to retain the knee movement I get when doing exercises.
You should check with your cardio department whether they do cardio rehab courses as I found these valuable in showing me how much I can exercise while in permanent AF. The exercises were easy to start with and one would think how useless this is but going from course to course we moved up to more exercise and now I go to the gym every day and use a heart monitor the type you strap around your chest and use wrist worn read out - you can buy these from any sports shops these days as I find my fit bit doesn't do well when I am exercising. I keep my heart rate under 120 when exercising and this works well and is also good for my knee.
This is a decision only you can make but if like me you are on for only a short time before and after the CV and are constantly checked then I would go for it. So long as everything is kept under active surveillance and you are checked regularly.
Take care,
Des
Thanks for writing- coincidentally I am arranging things around a TKR as well - finding the right balance is my main thing as I am sure you are aware
There are other people who have had a TKR and have not gone back into AF either during the op or after. However everyone is different and being on apixaban and not being able to have anti-inflamatories doens't help. It can be done though.
All the best.
I plan on freezing from the waist down so no anaesthetic
I had epidural and sedative so that should not have much effect on the AF. I also had my hip done that way as well but the operation took much longer than the hip - a new hip is a walk in the park compared to a TKR.
Find another EP. Ablation is the only way to go. The sooner you get one the greater chances of success. Amiodarone is very effective but potentially unsafe for long term use. There are also other drugs that are fairly effective but even if ablation “fails” it usually makes the drugs more effective.
Thanks for writing will keep what you say in mind
I would read about the risks of an ablation, there are many.
Having said that I had one and it was very successful with no side effects, as long as you understand the risks, good luck.
If you are not going to do as your doctor says I think you should ask for a second opinion, you are entitled to do this. Good luck.
Thanks for writing - yes I am taking other options & opinions
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