Atrial fibrillation medications side effects

Posted by pattyjm59 @pattyjm59, Sep 4, 2011

I am on 2 a-fib meds, diltiazem and fleccanide. Whie I am grateful they are preventing the a-fib and "protecting" (?) my heart, the side effects are just not worth it sometimes. I have gained a lot of weight, I have no energy anymore, my sex drive is non-existant and really straining my marriage, and I am just getting more and more depressed every day. I would like to know if there are better choices out there with all the new meds they come up with, something that won't destroy my life while saving it. I am almost at the point where I think it would be better to get off the meds completely and just take my chances with the a-fib. Someone please help! I need advice!! God bless you, thanks!

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Hi I just read your post and I am sorry to hear about what your medication is doing to you. It is truly a shame how at times we must suffer with medications that are supposed to help us at the same time. I am a Afib patient also, however I take Sotolal and even though it also has side affects, which all meds do either way the situation makes you scared at times. If the dose is high (ex. 80mg twice a day) it make me tired so I make sure I am up and doing things all the time. If you don't mind I would like to ask you how long have you been on these medications? Do you have to take them for the rest of your life?

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I am in much the same situation as you. Was just on diltiazem for three months and was able to maintain OK with most side effects (exhaustion, stomach problems of all sorts), but then severe joint and muscle swelling and pain set in and I finally realized I could not tolerate living like that. I began to back off Pradaxa and reported it to my general practitioner and cardiologist, who were and are upset with me. They told me to take Tylenol for the pain and continue. I could not and so quit. Two days ago I saw the cardiologist who wants me to begin Coumadin immediately and take a baby aspirin a day until my INR is where he feels it should be. I began with the baby aspirin and within a day began to have nose bleeds that I could not stop, and last night had to go to Urgent Care for that. Called the cardiologist who said to continue with the meds as prescribed.
I wish I could help you find an answer. Maybe just hearing that someone else is having the same difficulties will help just a little. I am also nearing the point of just taking my chances by taking no meds. Seems as though it is a choice between instant debilitation with meds, and possible debilitation down the road, with a stroke. Anyone out there who has found something helpful? God bless you too, pattyjm59.

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@mburr

I am in much the same situation as you. Was just on diltiazem for three months and was able to maintain OK with most side effects (exhaustion, stomach problems of all sorts), but then severe joint and muscle swelling and pain set in and I finally realized I could not tolerate living like that. I began to back off Pradaxa and reported it to my general practitioner and cardiologist, who were and are upset with me. They told me to take Tylenol for the pain and continue. I could not and so quit. Two days ago I saw the cardiologist who wants me to begin Coumadin immediately and take a baby aspirin a day until my INR is where he feels it should be. I began with the baby aspirin and within a day began to have nose bleeds that I could not stop, and last night had to go to Urgent Care for that. Called the cardiologist who said to continue with the meds as prescribed.
I wish I could help you find an answer. Maybe just hearing that someone else is having the same difficulties will help just a little. I am also nearing the point of just taking my chances by taking no meds. Seems as though it is a choice between instant debilitation with meds, and possible debilitation down the road, with a stroke. Anyone out there who has found something helpful? God bless you too, pattyjm59.

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Ugh, don't you HATE it when your docs won't listen to you?? It makes me so mad sometimes! No one knows our bodies like we do, and I think that sometimes they forget that not every patient is the same. We are all different and we all have different reactions to medications. I quit going to one cardiologist for that very reason, he was supposed to be the "best of the best," but he would never listen to me, and when I did finally get to see him after waiting for over an hour in his office, it was like, "Hi, how are you? Oh that's nice. See ya!" I am blessed in that now I have a cardio doc that I just love!!! He comes in, sits down, calls me by my name (Imagine that!) and really really listens to me! I agree that we have to be careful with our meds and not just quit taking them because it could be very dangerous. But so can going to an idiot doctor that treats you like a heifer at a cattle call! I would suggest continuing to see your docs, of course, but start asking around, friends and family, and see who they recommend. If the same name keeps coming up, check him or her out. Look the docs up on the internet because, believe it or not, they do have reviews on them posted. Ask others on the online community that may live in your area what they think of their docs. And finally, follow your own heart (no pun intended) and gut. If you are not comfortable with one doc, seek out another, and another if necessary, until you find one that you really like, and more importantly, that treats you like a friend and not just a patient. When docs recommend something to me, I do two things: I ask if it is something that they would prescribe for their own Mother (or sister or wife or daughter) and secondly, I do my own research on the net. This is our very life we are talking about here, and no one is going to care about it as much as we do. I will be praying for you!! God bless you always, (((hugs)))

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@essence10

Hi I just read your post and I am sorry to hear about what your medication is doing to you. It is truly a shame how at times we must suffer with medications that are supposed to help us at the same time. I am a Afib patient also, however I take Sotolal and even though it also has side affects, which all meds do either way the situation makes you scared at times. If the dose is high (ex. 80mg twice a day) it make me tired so I make sure I am up and doing things all the time. If you don't mind I would like to ask you how long have you been on these medications? Do you have to take them for the rest of your life?

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I have never heard of Sotoial, but I read an article on the web last night that talked about new meds coming out for a-fib that look promising. As far as being on these meds forever, at first my doc said yes, but he says now that once I quit smoking completely (I am trying very hard to, but what a struggle it is! So far all I have been able to do is cut way way down each day) and start exercising again, I may be able to get off of them. Now that it has cooled off some (I am in Georgia) I have started walking again every morning. LOL, let me tell ya, nothing makes you feel as guilty for being lazy all summer as the pain in your legs while walking up a hill! Ow, ow, ow! I think to myself, "serves you right, serves you right!" LOL!!! But you're right, some days it is so hard to get motivated! I have been on these meds since 2006. I used to take Digitek and it was awesome, because I dropped 40 pounds without even trying. Then, (of course! sigh!) they pulled it off the market when they found out it damaged your kidneys. It figures. LOL!! Oh well, my cousin said not to worry about my weight because the end of the world is coming and the skinny ones are going to die first!
{:->) Kidding, just kidding, please "skinny ones" don't be mad! What the heck, if we can't laugh at life, what good is it, right?

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@essence10

Hi I just read your post and I am sorry to hear about what your medication is doing to you. It is truly a shame how at times we must suffer with medications that are supposed to help us at the same time. I am a Afib patient also, however I take Sotolal and even though it also has side affects, which all meds do either way the situation makes you scared at times. If the dose is high (ex. 80mg twice a day) it make me tired so I make sure I am up and doing things all the time. If you don't mind I would like to ask you how long have you been on these medications? Do you have to take them for the rest of your life?

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Hey, listen I know its tough, but your health is extremely important. Once I was diagnosed with heart disease I started researching and reading more about it. At the time computers weren't even available. So I had to go to the library and read a lot. I found books on healthy diets and I change my diet instantly. It is important to take care of yourself and eat right, because truly a lot a weight can cause other issues and I know that you want the best for yourself. You must take care of you first. It is a tough battle but find what works for you. I had to get used to eating different things, but your taste buds change all the time anyway. I don't eat red meat or pork. I don't eat pork anyway, but I stopped eating red meat 21 years ago and you do feel better. I love fruit and vegetables and I do enjoy eating healthy, My weight is very important to me and I make sure that is maintained. You can do it too, 🙂 Exercising is good too, but your eating habits is more important. Work on both together. People always say to me don't you find it hard to not eat or drink when others are around you and I say no, because they are doing what they have to do and I am doing what I have to do. I don't have a big appetite anyway and I am glad about that. I hope that you will find what works for you and you and only you can do that for yourself. You are first remember that!

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@essence10

Hi I just read your post and I am sorry to hear about what your medication is doing to you. It is truly a shame how at times we must suffer with medications that are supposed to help us at the same time. I am a Afib patient also, however I take Sotolal and even though it also has side affects, which all meds do either way the situation makes you scared at times. If the dose is high (ex. 80mg twice a day) it make me tired so I make sure I am up and doing things all the time. If you don't mind I would like to ask you how long have you been on these medications? Do you have to take them for the rest of your life?

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I am on diltiazam for a-fib which has stopped the a-fib. Why is doc giving you the second pill. That one might be the culprit. I am usually very sensitive to drugs and the diliaz has not caused me to lose my energy, sex drive, etc, etc. I feel very well. am 78 years female. Would love to go off the Warfaran but doctor says NOT!. Good luck ask doctor to give you only Diltiz to see how it works without the second pill..

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(after I wrote this, I realized I probably am in the wrong place; should have posted as the last entry, I think, sorry) Hi, new here. Diagnosed in Oct. w/A.fib, too afraid to be shocked, and hated idea of Coumadin, took me time to think. Immediately put on metoprolol twice daily, helped slow my heart rate, but made me short of breath on walking, climbing stairs, etc., I felt awful as I used to be a fast walker. Started on Coumadin last week, awaiting my first blood test. I really have what I call almost "crippling anxiety" as to what could happen to me after being warned I could throw a clot, etc. However, I am reluctantly taking these meds and have actively sought out a supervised medical exercise program at a hospital. Because I am not accepting or having any surgery, I have to pay out of pocket at $100 per mo, a sacrifice, will have to give up something else. The ins. co. as of 2012 is giving me a hard time on all my meds, suggesting new stuff to replace my old meds for other things, not even giving me a chance to work with the Coumadin. Nothing had negative reactions last week, however, they are writing my doc to change old meds into new stuff (probably from China), as I get terrible back pain from arthritis when I do walk; so it is very, very frustrating and my heart goes out to all on this walk.I was already on a beta blocker and ACE inhibitor for blood pressure and they are denying my anxiety med, no longer will pay for alprazolam. So if the disease doesn't kill us, our insurance company will, why don't they stick with what works?? Anyway, I find great help on the Internet as they will answer questions the docs don't have "time" for - no patience for questions. Keep going to medical websites, I have learned a lot about vitamin K and other things to avoid, like mayonnaise, etc. Some say eat what you want, drink what you want but be conservative and consistent. I do not agree, I say eat what's healthy, even if you don't like it (fish, yuck) and I DO NOT drink alcohol as it thins the blood even more. But hey, I'm just a patient, but I do have a brain and intend to use it, along with the docs on the net and choose what works for me. So far, a good diet and good habits, but the anxiety is overpowering, I do believe in a higher power, and "turn it over" every night, but I walk the walk of researching and won't give up. Hope everyone feels better. Be the hero of your own story is all I can say. Glad to find this site!! I hope my readings are good or I will be devastatingly depressed as I am trying so hard.

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@mburr

I am in much the same situation as you. Was just on diltiazem for three months and was able to maintain OK with most side effects (exhaustion, stomach problems of all sorts), but then severe joint and muscle swelling and pain set in and I finally realized I could not tolerate living like that. I began to back off Pradaxa and reported it to my general practitioner and cardiologist, who were and are upset with me. They told me to take Tylenol for the pain and continue. I could not and so quit. Two days ago I saw the cardiologist who wants me to begin Coumadin immediately and take a baby aspirin a day until my INR is where he feels it should be. I began with the baby aspirin and within a day began to have nose bleeds that I could not stop, and last night had to go to Urgent Care for that. Called the cardiologist who said to continue with the meds as prescribed.
I wish I could help you find an answer. Maybe just hearing that someone else is having the same difficulties will help just a little. I am also nearing the point of just taking my chances by taking no meds. Seems as though it is a choice between instant debilitation with meds, and possible debilitation down the road, with a stroke. Anyone out there who has found something helpful? God bless you too, pattyjm59.

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Um, if it was me, I'd find a different cardiologist. I was going to one here in Augusta (GA) that was supposed to be the best of the best when it came to A-Fib treatments. I'd sit in the waiting room for an hour, and another 30 minutes in the room. Then a different doc would come in an see me, and finally Doc "Expert" would breeze in, not listen to a word I said, tell me I looked great and "See you in 6 months." I had enough! I started asking around, everyone I knew and folks I met. "Who's a great heart doc?" Well the same name came up several times, so I made an appointment. I LOVE the heart doc I have now! He is kind and compassionate, and listens to me, addresses my questions and concerns, and I really and truly consider him a friend as well as my doc! He wanted me to get on Coumadin. I refused. I had heard too many bad things about it. So we discussed other alternatives. I am on a new med now called Cardivol, and while it's not perfect either, it's a big step up from the diltiazem! I have more energy and just feel better. I also take 4 baby aspirins a day, which is also preferable for me personally than the Coumadin. I do have some leg swelling which is bothersome and at times painful. But if I keep up with my walking, it helps a lot. Now keep in mind, this is just my own personal thing; we are all different. But I learned a long time ago to do my my own research, and if I'm not comfortable with my doc, I have no qualms about finding a different one. This is my life here and I want a doc that helps me to preserve it without taking a dive on quality. I will keep all y'all in my prayers. WE CAN BEAT THIS! But never just stop your meds all at once without a doc's advice; it would be too dangerous. (((hugs)))

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Go to http://www.stopafib.org and or http://www.afib.com as well as Mayo for good information.

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@mburr

I am in much the same situation as you. Was just on diltiazem for three months and was able to maintain OK with most side effects (exhaustion, stomach problems of all sorts), but then severe joint and muscle swelling and pain set in and I finally realized I could not tolerate living like that. I began to back off Pradaxa and reported it to my general practitioner and cardiologist, who were and are upset with me. They told me to take Tylenol for the pain and continue. I could not and so quit. Two days ago I saw the cardiologist who wants me to begin Coumadin immediately and take a baby aspirin a day until my INR is where he feels it should be. I began with the baby aspirin and within a day began to have nose bleeds that I could not stop, and last night had to go to Urgent Care for that. Called the cardiologist who said to continue with the meds as prescribed.
I wish I could help you find an answer. Maybe just hearing that someone else is having the same difficulties will help just a little. I am also nearing the point of just taking my chances by taking no meds. Seems as though it is a choice between instant debilitation with meds, and possible debilitation down the road, with a stroke. Anyone out there who has found something helpful? God bless you too, pattyjm59.

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Take it from someone who had an afib stroke, YOU do NOT want one. Take Coumadin as it is the one blood thinner with an antidote. Find a RN to help you regulate the dosage better. Or find a finger stick monitor clinic and test more often. U should not be having bleeding from gums or nose. Good luck.

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