Dofetilide and Artrial fibrillation

Posted by lisa619 @lisa619, 5 days ago

So I am taking Dofetilitide and ever since it has been hiding the Afib pretty good and went to a new cardiologist because my old one left. But the electophsygiist could not find the Afib in my records from the 10 years that I have been switched to different medication and going back to 18 years ago I was put on an event monitor and that is how they found out I had it. I was pretty bad then and bad palpitations where I had to lay down and had over 3 hours. Any way they want to take me off my medication because they can’t find it anymore does anyone have thoughts on this? It scares me because I was so bad before and my old cardiologist made me promise to never go off of it. My records don’t go back from 18 years ago and they just don’t seem to believe me these doctors. Now they found Supra Ventricular tachycardia. Oh they said don’t worry you can’t die from Afib.

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@lisa619

We are all different so can't give advice. Can only tell you my Afib experience. And, yes, I take Dofetilide. I also have Apical Hypertrophic Cardiomyopathy which makes Afib harder to treat. When Afib first appeared on the scene, it was persistent (was in Afib 100% of the time for six months). My cardiologist explained that I probably had it for some time. I was having palpitations which were probably beginning Afib, but never showed up on holter monitor until persistent. Also very high heart rate. Would sometimes spike as high as 175 or more. They tried rate control which did not work and when I saw EP, he gave me options of medication or ablation and when I asked what he would reccomend he said start with meds. Ablation sometimes takes numerous times to work when you have ApHcm. Both doctors told me Afib is a progressive disease and never goes away. However, it you can go long periods of time without an episode if it isn't persistent. I think I would get a second opinion. Perhaps they can't find it because it is completely controlled by the dofetilide. Guess if you do go off the medication, you would find out if you do have Afib. Good luck with whatever you choose and keep us posted.

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Profile picture for emo44 @emo44

@lisa619

We are all different so can't give advice. Can only tell you my Afib experience. And, yes, I take Dofetilide. I also have Apical Hypertrophic Cardiomyopathy which makes Afib harder to treat. When Afib first appeared on the scene, it was persistent (was in Afib 100% of the time for six months). My cardiologist explained that I probably had it for some time. I was having palpitations which were probably beginning Afib, but never showed up on holter monitor until persistent. Also very high heart rate. Would sometimes spike as high as 175 or more. They tried rate control which did not work and when I saw EP, he gave me options of medication or ablation and when I asked what he would reccomend he said start with meds. Ablation sometimes takes numerous times to work when you have ApHcm. Both doctors told me Afib is a progressive disease and never goes away. However, it you can go long periods of time without an episode if it isn't persistent. I think I would get a second opinion. Perhaps they can't find it because it is completely controlled by the dofetilide. Guess if you do go off the medication, you would find out if you do have Afib. Good luck with whatever you choose and keep us posted.

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@emo44 They want me to go off of it and start slowly but when I had it before I was diagnosed it was bad. It makes me nervous but I have no other choice but the sad thing is they don’t believe me it seems of having it.

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Profile picture for lisa619 @lisa619

@emo44 They want me to go off of it and start slowly but when I had it before I was diagnosed it was bad. It makes me nervous but I have no other choice but the sad thing is they don’t believe me it seems of having it.

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@lisa619 They want you off it for two reasons, and they are both important for you to maybe learn more about on your own, and then to understand....AND....to accept....so that you can relax and let them do their job. I'll explain:

a. Atrial fibrillation won't kill you. It can make you miserable, and maybe WANT to die, but it won't kill you by itself. It DOES progress...for most every patient...and it becomes harder to control or to treat the longer you let it go without treatment. So, treat it early;

b. The Dofetilide is obstructing the EP in his/her attempt to help you. It is masking the arrhythmia and making it hard for the EP to find it, and then to nip it. The EP wants you off Dofetilide (remember, it won't kill you!) hoping that your heart will act up more and make the foci/reentrants of your AF more obvious, and once he can spot them, it's easy to zap around them with energy and dam them up with scar tissue....which is what an ablation does. Ablations surround the foci with circles of scar tissue which the errant signals cannot cross. When they do a PVI, a pulmonary vein isolation, which I think is all you'll probably need (you're still in the paroxysmal stage because your AF comes and goes), he literally burns tiny dots all around your pulmonary vein outlets on the back wall of the left atrium, and this confines those extra signals that make the atrium beat chaotically. No signals = no AF. Simple.

Dofetilide is hampering him in his deisre to free you from your own AF. If you were to ask me, I'd say two months in misery might make it all history when he ablates and you wake up with a heart happily beating in rhythm. It's day surgery....you're home that night.

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Profile picture for gloaming @gloaming

@lisa619 They want you off it for two reasons, and they are both important for you to maybe learn more about on your own, and then to understand....AND....to accept....so that you can relax and let them do their job. I'll explain:

a. Atrial fibrillation won't kill you. It can make you miserable, and maybe WANT to die, but it won't kill you by itself. It DOES progress...for most every patient...and it becomes harder to control or to treat the longer you let it go without treatment. So, treat it early;

b. The Dofetilide is obstructing the EP in his/her attempt to help you. It is masking the arrhythmia and making it hard for the EP to find it, and then to nip it. The EP wants you off Dofetilide (remember, it won't kill you!) hoping that your heart will act up more and make the foci/reentrants of your AF more obvious, and once he can spot them, it's easy to zap around them with energy and dam them up with scar tissue....which is what an ablation does. Ablations surround the foci with circles of scar tissue which the errant signals cannot cross. When they do a PVI, a pulmonary vein isolation, which I think is all you'll probably need (you're still in the paroxysmal stage because your AF comes and goes), he literally burns tiny dots all around your pulmonary vein outlets on the back wall of the left atrium, and this confines those extra signals that make the atrium beat chaotically. No signals = no AF. Simple.

Dofetilide is hampering him in his deisre to free you from your own AF. If you were to ask me, I'd say two months in misery might make it all history when he ablates and you wake up with a heart happily beating in rhythm. It's day surgery....you're home that night.

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@gloaming thank you so much for explaining this to me. I appreciate it so much. Hopefully maybe I am cured instead of Afib and it won’t come back?

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Profile picture for lisa619 @lisa619

@gloaming thank you so much for explaining this to me. I appreciate it so much. Hopefully maybe I am cured instead of Afib and it won’t come back?

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@lisa619 You're welcome. Just a gentle re-orientation if I may: you can't be 'cured' from this. Once your heart develops an arrhythmia, you're an arrhythmia patient for life. I was ablated twice inside of seven months (first ablations have a 25% failure-to-correct rate across patients getting a first ablation). I have been free from AF for three years now. But, if by magic all the scarring inside my left atrium, in my case around my pulmonary vein ostia on the back wall, could be reversed and original endothelial tissue left behind, my heart would immediately lurch back into AF. The reason is that those rogue signalling cells in the myocardial substrate around my pulmonary veins are still there!! They're still firing away, madly trying to take over my heart. And yours. The difference is that they are now surrounded by scars, circles around the pulmonary veins of essentially dead tissue, and they can't get their electrical impulses out of them...those circular scar dams. Result is your heart returns to only getting the Sino-atrial node's original, life-long, signal and it dutifully beats once again in normal sinus rhythm (NSR). I'd take as a win. 😀

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Profile picture for gloaming @gloaming

@lisa619 You're welcome. Just a gentle re-orientation if I may: you can't be 'cured' from this. Once your heart develops an arrhythmia, you're an arrhythmia patient for life. I was ablated twice inside of seven months (first ablations have a 25% failure-to-correct rate across patients getting a first ablation). I have been free from AF for three years now. But, if by magic all the scarring inside my left atrium, in my case around my pulmonary vein ostia on the back wall, could be reversed and original endothelial tissue left behind, my heart would immediately lurch back into AF. The reason is that those rogue signalling cells in the myocardial substrate around my pulmonary veins are still there!! They're still firing away, madly trying to take over my heart. And yours. The difference is that they are now surrounded by scars, circles around the pulmonary veins of essentially dead tissue, and they can't get their electrical impulses out of them...those circular scar dams. Result is your heart returns to only getting the Sino-atrial node's original, life-long, signal and it dutifully beats once again in normal sinus rhythm (NSR). I'd take as a win. 😀

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@gloaming So once I am off my medication then eventually I will have an Afib attack again?

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Profile picture for lisa619 @lisa619

@gloaming So once I am off my medication then eventually I will have an Afib attack again?

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@lisa619 Quite possibly...yes. Maybe not. But, given your history of AF, and that you also have a history of 'dependency', presumably, with the anti-arrhythmia drug(s), we should both expect your heart to begin to act up again. Maybe not immediately, but it might begin within 12 hours of your last dose....probably more like 24 hours, or days later. I'm just trying to use reason: if you have been using a drug meant for an effect, and you remove the drug.................................................................. would it be reasonable to expect the loss of the drug to encourage what it was meant to discourage? I would think so. The point is that, if you can steel yourself, grit it out, and get to the ablation, your heart will reveal all its trouble spots and the EP can both locate them and zap them. I don't know that I can encourage you to undertake this burden, and maybe the dread it raises, but if you can grit your teeth and tough it out for at least a full month free of the medication, you may just increase your chances of a successful ablation by several times. It's a thought. And, remembering that I don't know you or your EP, it may be precisely how he sees it as well. You could always ask your EP for clarification and reassurances.

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Profile picture for gloaming @gloaming

@lisa619 Quite possibly...yes. Maybe not. But, given your history of AF, and that you also have a history of 'dependency', presumably, with the anti-arrhythmia drug(s), we should both expect your heart to begin to act up again. Maybe not immediately, but it might begin within 12 hours of your last dose....probably more like 24 hours, or days later. I'm just trying to use reason: if you have been using a drug meant for an effect, and you remove the drug.................................................................. would it be reasonable to expect the loss of the drug to encourage what it was meant to discourage? I would think so. The point is that, if you can steel yourself, grit it out, and get to the ablation, your heart will reveal all its trouble spots and the EP can both locate them and zap them. I don't know that I can encourage you to undertake this burden, and maybe the dread it raises, but if you can grit your teeth and tough it out for at least a full month free of the medication, you may just increase your chances of a successful ablation by several times. It's a thought. And, remembering that I don't know you or your EP, it may be precisely how he sees it as well. You could always ask your EP for clarification and reassurances.

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@gloaming Thank you so much and I guess I will ask him this for sure.

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Profile picture for emo44 @emo44

@lisa619

We are all different so can't give advice. Can only tell you my Afib experience. And, yes, I take Dofetilide. I also have Apical Hypertrophic Cardiomyopathy which makes Afib harder to treat. When Afib first appeared on the scene, it was persistent (was in Afib 100% of the time for six months). My cardiologist explained that I probably had it for some time. I was having palpitations which were probably beginning Afib, but never showed up on holter monitor until persistent. Also very high heart rate. Would sometimes spike as high as 175 or more. They tried rate control which did not work and when I saw EP, he gave me options of medication or ablation and when I asked what he would reccomend he said start with meds. Ablation sometimes takes numerous times to work when you have ApHcm. Both doctors told me Afib is a progressive disease and never goes away. However, it you can go long periods of time without an episode if it isn't persistent. I think I would get a second opinion. Perhaps they can't find it because it is completely controlled by the dofetilide. Guess if you do go off the medication, you would find out if you do have Afib. Good luck with whatever you choose and keep us posted.

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@emo44 I'm 75 and having palpitations all night. Can't sleep. Tired and weak the next day. Do palpitations mean I need ablation?

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Profile picture for dcypherzzz @dcypherzzz

@emo44 I'm 75 and having palpitations all night. Can't sleep. Tired and weak the next day. Do palpitations mean I need ablation?

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@dcypherzzz It's a great question.....................best answered between you and a consulting electrophysiologist. An EP will look at your file, talk to you, ask for one or two diagnostics such as an angiogram..maybe...and decide for him/herself if you are likely to do well with an ablation.

Ablations can stop the unwanted cardiac rhythm. They don't always work, although a repeated attempt usually improves the chances by at least 10%. The more complex your arrhythmia, the more difficult it is to ablate. The more advanced your arrhythmia, the more difficult it is to ablate. So we tell people to make up their minds sooner rather than later if they want to have an ablation, but that puts them in the position of having to learn more. Here is what matters:

a. The type of arrhythmia. Some kinds don't do well with ablations and may need a pacemaker;

b. Many arrhythmias tend to progress, either to worse forms of themselves or to include other arrhythmias. The idea is to treat them as soon as formally diagnosed either with medicine or with mechanical 'fixes', they being ablations or a pacemaker;

c. And finally, in many cases medicine is about treating symptoms, or rather trying to maintain or to improve the patient's quality of life. As you know only too well, arrhythmias can greatly impact one's quality of life with sleep loss, crappy sleep when you get it, feeling anxious, inability to function well and to maintain relationships, etc. Most of us soon accept that the best treatment is one that is least invasive and risky, but that also stops or severely limits those unwanted side-effects (from drugs) and symptoms.

If you have not been formally assessed yet, you should get that done last afternoon. The reason is that some arrhythmias present a higher risk of a stroke because the poorer circulation of blood in an affected heart can encourage clotting. Escaped clots get lodged into the heart itself, the lungs, the organs, and worst of all, the brain. If you have atrial fibrillation, as an example, your risk of a clot and a stroke from it rises to about 5 times what it was before your heart began to act up. So my advice is to get to a cardiologist ASAP and to begin to educate yourself about the arrhythmia you seem to have. From there, knowledge will be your trump card.

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