Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 wrote: I am shocked by all the folks who take the ablation road soon after initial diagnosis.Best wishes to them all. , you know what? So am I. Since I joined this forum last May it has really surprised me when some people write " I was diagnosed Tuesday and I am getting an ablation next week. " I am a slowpoke where afib is concerned and want to be pretty conservative in treating it. But that's me, and I was less symptomatic than many I have read about here. Still...I think it is wise to go slowly with this thing. Lil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Thats interesting I was put on amiodarone and had a lot of mucus. The NHS in the uk seem to use amiodarone like confetti, giving it to patients who do not need it. Its a horrid drug and best avoided. RE: 1-2-3 Ablation http://www.afibsupport.com List owner: AFIBsupport-owner For help on how to use the group, including how to drive it via email, send a blank email to AFIBsupport-help Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 , I whole-heartedly agree with you and Lil. I can only speak from my own experience, where a beta-blocker worked for me for a year. Now I'm taking a beta blocker and a calcium channel blocker. I still have a-fib, but my heart rate stays reasonable (70 bpm or so), so I can fitness walk and lift weights. So, my belief is this: first try lifestyle/diet/trigger avoidance changes. If that begins to fail, the next step is rate control, with beta blockers and calcium channel blockers. And coumadin should be taken from the get-go (or any other alternative to help protect against the possibility of stroke.) If and when a-fib begins to break through again, I will try increased doses of beta blockers and calcium channel blockers. And if that fails, only then will I even begin to consider rhythm control drugs, cardioversion, and ultimately ablation. I've had a-fib off and on for a couple of years, followed by persistent a-fib for an additional 3 months now, with either no drugs or rate control drugs only. I have yet to even consider rhythm control drugs or cardioversion, and hope I never have to. And I am still active and still exercise daily. This would not be a solution for many in this group, but it works for me. To summarize, my A-fib experience goes like this: 1. I have no clue why I feel sick so often. Time passes . . . 2. Condition gets bad enough that I actually see a doctor. Oh, it's something called " A-fib " . Do diet/lifestyle changes. Take a blood thinner. Time passes . . . 3. Well, that no longer works. Add a beta blocker to the mix. Time passes . . . 4. Well, that no longer works very well. Add a calcium channel blocker to the mix. This is the stage I'm at now. Time passes . . . 5. Consider rhythm control and cardioversion. Time passes . . . 6. Consider ablation, but either I need to be in horrible shape, or the procedure will have to have a much higher rate of success before I will subject myself to it. Just my humble opinion. Mike > I am shocked by all the folks who take the ablation road soon after > initial diagnosis.Best wishes to them all. > > , you know what? So am I. Since I joined this forum last May it has > really surprised me when some people write " I was diagnosed Tuesday and I am > getting an ablation next week. " I am a slowpoke where afib is concerned and > want to be pretty conservative in treating it. But that's me, and I was less > symptomatic than many I have read about here. Still...I think it is wise to go > slowly with this thing. > Lil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Mike - people with the highest rate of success with ablations are those that are still paroxsysmal (meaning you self convert to NSR). You indicate having persistent afib, which means that you now need help converting back into NSR, but you also talk about rate control, so it's really hard to tell what you mean.. do you mean you are in permanent afib (meaning all the time)? For permanent afib, I can see where rate control, if successful, is a viable option for sure, and likely at this point preferable to an ablation. There are many of us for whom rate control drugs do nothing. I am somewhere between paroxsysmal and persistent afib, but completely refractory to rate control, so my options for continued control are dwindling. I'd love to be able to wait a few years for something better to come along, but I fear my time is short, as far as afib is concerned, and once I go permanent, any sort of treatment will be much more difficult. There is a very gray area when deciding " when " is the best time to seek an ablation.. and even when it's obvious, it's still not an easy choice. Stef Sellon mikesellon@...> wrote: , I whole-heartedly agree with you and Lil. I can only speak from my own experience, where a beta-blocker worked for me for a year. Now I'm taking a beta blocker and a calcium channel blocker. I still have a-fib, but my heart rate stays reasonable (70 bpm or so), so I can fitness walk and lift weights. So, my belief is this: first try lifestyle/diet/trigger avoidance changes. If that begins to fail, the next step is rate control, with beta blockers and calcium channel blockers. And coumadin should be taken from the get-go (or any other alternative to help protect against the possibility of stroke.) If and when a-fib begins to break through again, I will try increased doses of beta blockers and calcium channel blockers. And if that fails, only then will I even begin to consider rhythm control drugs, cardioversion, and ultimately ablation. I've had a-fib off and on for a couple of years, followed by persistent a-fib for an additional 3 months now, with either no drugs or rate control drugs only. I have yet to even consider rhythm control drugs or cardioversion, and hope I never have to. And I am still active and still exercise daily. This would not be a solution for many in this group, but it works for me. To summarize, my A-fib experience goes like this: 1. I have no clue why I feel sick so often. Time passes . . . 2. Condition gets bad enough that I actually see a doctor. Oh, it's something called " A-fib " . Do diet/lifestyle changes. Take a blood thinner. Time passes . . . 3. Well, that no longer works. Add a beta blocker to the mix. Time passes . . . 4. Well, that no longer works very well. Add a calcium channel blocker to the mix. This is the stage I'm at now. Time passes . . . 5. Consider rhythm control and cardioversion. Time passes . . . 6. Consider ablation, but either I need to be in horrible shape, or the procedure will have to have a much higher rate of success before I will subject myself to it. Just my humble opinion. Mike > I am shocked by all the folks who take the ablation road soon after > initial diagnosis.Best wishes to them all. > > , you know what? So am I. Since I joined this forum last May it has > really surprised me when some people write " I was diagnosed Tuesday and I am > getting an ablation next week. " I am a slowpoke where afib is concerned and > want to be pretty conservative in treating it. But that's me, and I was less > symptomatic than many I have read about here. Still...I think it is wise to go > slowly with this thing. > Lil Web Page - http://www.afibsupport.com List owner: AFIBsupport-owner For help on how to use the group, including how to drive it via email, send a blank email to AFIBsupport-help Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Hi Stef, I am in constant Afib, and have been for 3 months now. My cardiologist and EP have never tried to convert me back to NSR with rhythm control drugs or cardioversion. Because I have an underlying structural heart problem (HOCM) they don't think I would stay in NSR for very long. So, since they've not yet tried conversion, I think I am technically in Persistent Afib, not Permanent. Please let me know if I'm incorrect in this assumption. As to the rest of your post, I am in complete agreement. If you're refractory to rate control drugs, that leaves only rhythm control or surgical techniques. That's why I stated in my original post, " This would not be a solution for many in this group, but it works for me. " I'm sorry to hear that rate control drugs don't work for you. At some point in the future, they likely won't work for me either. But for now I'll count my blessings, and naively pretend that I won't ever reach that point. But, since I'm likely to follow in your footsteps, I'll certainly be interested in the course you choose to steer. Thanks, Stef. Mike > > Mike - people with the highest rate of success with ablations are those that are still paroxsysmal (meaning you self convert to NSR). You indicate having persistent afib, which means that you now need help converting back into NSR, but you also talk about rate control, so it's really hard to tell what you mean.. do you mean you are in permanent afib (meaning all the time)? For permanent afib, I can see where rate control, if successful, is a viable option for sure, and likely at this point preferable to an ablation. > > There are many of us for whom rate control drugs do nothing. I am somewhere between paroxsysmal and persistent afib, but completely refractory to rate control, so my options for continued control are dwindling. I'd love to be able to wait a few years for something better to come along, but I fear my time is short, as far as afib is concerned, and once I go permanent, any sort of treatment will be much more difficult. > > There is a very gray area when deciding " when " is the best time to seek an ablation.. and even when it's obvious, it's still not an easy choice. > > Stef Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Hi - if you're always in afib, you're " permanent " .. " persistent " means that you convert back to NSR with either drugs or cardioversion.. you COULD be persistent and just not know it, since they haven't tried anything on you yet! I'm persistent, although very occassionally paroxsysmal stil... And believe it or not I went BACK into afib again this evening... I did nothing whatsoever to trigger it.. was watching a movie.. the most strenuous thing I did today was take down the outside christmas lights... I'm so frustrated. I called the cardio on call and she told me to take an extra 50 mg atenenlol and 50 mcg digoxin.. that was around 8:30, and I have no change in my rate yet.. still hammering away at 140+... if I don't convert over night (that would be a miracle!) then I have to go in for another cardioversion tomorrow.. that will be 3 this week... and two in two days... I would really just like to know why the sudden onslaught of events.. I had nothing for 15 months and now I've had 7 events in 4 months. I sometimes wonder whether the higher dose of antiarrythmics are to blame... anyone else ever feel this? I know they're going to want to try switching drugs.. I'm tempted to take a week off of everything and see what happens... can't hurt at this point, I'm thinking! Thoughts on this? Stef Sellon mikesellon@...> wrote: Hi Stef, I am in constant Afib, and have been for 3 months now. My cardiologist and EP have never tried to convert me back to NSR with rhythm control drugs or cardioversion. Because I have an underlying structural heart problem (HOCM) they don't think I would stay in NSR for very long. So, since they've not yet tried conversion, I think I am technically in Persistent Afib, not Permanent. Please let me know if I'm incorrect in this assumption. As to the rest of your post, I am in complete agreement. If you're refractory to rate control drugs, that leaves only rhythm control or surgical techniques. That's why I stated in my original post, " This would not be a solution for many in this group, but it works for me. " I'm sorry to hear that rate control drugs don't work for you. At some point in the future, they likely won't work for me either. But for now I'll count my blessings, and naively pretend that I won't ever reach that point. But, since I'm likely to follow in your footsteps, I'll certainly be interested in the course you choose to steer. Thanks, Stef. Mike > > Mike - people with the highest rate of success with ablations are those that are still paroxsysmal (meaning you self convert to NSR). You indicate having persistent afib, which means that you now need help converting back into NSR, but you also talk about rate control, so it's really hard to tell what you mean.. do you mean you are in permanent afib (meaning all the time)? For permanent afib, I can see where rate control, if successful, is a viable option for sure, and likely at this point preferable to an ablation. > > There are many of us for whom rate control drugs do nothing. I am somewhere between paroxsysmal and persistent afib, but completely refractory to rate control, so my options for continued control are dwindling. I'd love to be able to wait a few years for something better to come along, but I fear my time is short, as far as afib is concerned, and once I go permanent, any sort of treatment will be much more difficult. > > There is a very gray area when deciding " when " is the best time to seek an ablation.. and even when it's obvious, it's still not an easy choice. > > Stef Web Page - http://www.afibsupport.com List owner: AFIBsupport-owner For help on how to use the group, including how to drive it via email, send a blank email to AFIBsupport-help Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Hi Stef, Sorry to hear you are back in afib. Just an observation of mine. Do you think that there may be added stress on you because of the study you are in. Stress is one of, if not the main trigger for some of us. Hope your better soon. Earl > > > > Mike - people with the highest rate of success with ablations are > those that are still paroxsysmal (meaning you self convert to NSR). > You indicate having persistent afib, which means that you now need > help converting back into NSR, but you also talk about rate control, > so it's really hard to tell what you mean.. do you mean you are in > permanent afib (meaning all the time)? For permanent afib, I can see > where rate control, if successful, is a viable option for sure, and > likely at this point preferable to an ablation. > > > > There are many of us for whom rate control drugs do nothing. I > am somewhere between paroxsysmal and persistent afib, but completely > refractory to rate control, so my options for continued control are > dwindling. I'd love to be able to wait a few years for something > better to come along, but I fear my time is short, as far as afib is > concerned, and once I go permanent, any sort of treatment will be > much more difficult. > > > > There is a very gray area when deciding " when " is the best time > to seek an ablation.. and even when it's obvious, it's still not an > easy choice. > > > > Stef > > > > > > Web Page - http://www.afibsupport.com > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Hi Earl - thanks for the thoughts.... and no, I don't think the study is causing me any stress... I am keeping on the same medication and the follow ups are negligible.. if I remain " medicated " I have to go back at one month (next Monday), three months and 6 and then 12.. I think that's it... I don't really have to do anything else unless I go for the cryoablation. I spent 7 hours in the ER today.. cardio on call wanted to try dig and cardizem to convert me, despite a permanent record that says " skip the drugs.. they don't work " ... so I had the push and I had the drip, and my heart, in afib, went down to the 50s but would NOT convert.. so then they have to wait for the cardizem to wear off so my pulse wouldn't plumet once I converted.. I was still in the 40 to 50 range upon conversion... They upped my atenelol to 150 mg per day (up from 100) and started digoxin .25 per day.. this in addition to my Tikosyn. I'm hoping this holds for another two months, but geeze... how unlikely is that? The other option is to be admitted and start Rhythmol instead.. see how that might work.... I obviously cannot be getting cardioverted every two days... that's just silly! So, now I wait and pray and try to do everything " right " as best I can.. that's all I can do! I'll get by.. just a little frustrating at times, as we all know. Stef Earl Kehr kehr1945@...> wrote: Hi Stef, Sorry to hear you are back in afib. Just an observation of mine. Do you think that there may be added stress on you because of the study you are in. Stress is one of, if not the main trigger for some of us. Hope your better soon. Earl > > > > Mike - people with the highest rate of success with ablations are > those that are still paroxsysmal (meaning you self convert to NSR). > You indicate having persistent afib, which means that you now need > help converting back into NSR, but you also talk about rate control, > so it's really hard to tell what you mean.. do you mean you are in > permanent afib (meaning all the time)? For permanent afib, I can see > where rate control, if successful, is a viable option for sure, and > likely at this point preferable to an ablation. > > > > There are many of us for whom rate control drugs do nothing. I > am somewhere between paroxsysmal and persistent afib, but completely > refractory to rate control, so my options for continued control are > dwindling. I'd love to be able to wait a few years for something > better to come along, but I fear my time is short, as far as afib is > concerned, and once I go permanent, any sort of treatment will be > much more difficult. > > > > There is a very gray area when deciding " when " is the best time > to seek an ablation.. and even when it's obvious, it's still not an > easy choice. > > > > Stef > > > > > > Web Page - http://www.afibsupport.com > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. > > > > Quote Link to comment Share on other sites More sharing options...
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