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Second Attempt EP STudy???
My fiance was diagnosed with NSVT in October while wearing a 30 day loop monitor. This is the 2nd or 3rd time he's worn the monitor since he became symptomatic January of 2006, and it FINALLY caught the problem! However, we went in for the EP study last friday and they were unsuccessful at inducing his arrhythmia. He has undergone all the necessary testing (EKG's, stress tests, angio last October when they thought it may be "plumbing", MRI, etc etc etc). He has a completely normal heart structurally, with no indication of CAD or any other cardiac disease. His Metoprolol was not successful at controlling his PVC's, PAC's, or NSVT, he even an atrial run while on it and still wearing the monitor--he did experience side effects and was at a "lower" dose according to his doctors.
After the failed EP study they decreased his metoprolol (and put him on the XL so it's only once daily now), and started him on flecainide. They recommended 100mg twice daily, he started at 50mg twice daily knowing the side effects were going to be brutal (which they were)--that was 5 days ago. He is experiencing palpitations (sometimes feeling like 4 or more in a run) multiple times a day, two nights they have woken him up (same scenario as when the NSVT was found). He's going to see his EP specialist in 4 weeks for a follow up, they will then discuss the next step. Before they released him Friday night they said we may be trying this again in a few months, that it was possible they may be able to induce it at a second attempt....but I don't really understand why?
Is there anyone who's had a failed first attempt and a successful second attempt? Was it for NSVT or VT of any kind? Did you have any reoccurrence of PVC's, PAC's, or VT after? If successful, where did you have it done and who was your doc?
We'll discuss all this with the doctors, of course, but I cannot find ANY research articles or anything about the success rate of 2nd attempts.
Thank you!!!!
After the failed EP study they decreased his metoprolol (and put him on the XL so it's only once daily now), and started him on flecainide. They recommended 100mg twice daily, he started at 50mg twice daily knowing the side effects were going to be brutal (which they were)--that was 5 days ago. He is experiencing palpitations (sometimes feeling like 4 or more in a run) multiple times a day, two nights they have woken him up (same scenario as when the NSVT was found). He's going to see his EP specialist in 4 weeks for a follow up, they will then discuss the next step. Before they released him Friday night they said we may be trying this again in a few months, that it was possible they may be able to induce it at a second attempt....but I don't really understand why?
Is there anyone who's had a failed first attempt and a successful second attempt? Was it for NSVT or VT of any kind? Did you have any reoccurrence of PVC's, PAC's, or VT after? If successful, where did you have it done and who was your doc?
We'll discuss all this with the doctors, of course, but I cannot find ANY research articles or anything about the success rate of 2nd attempts.
Thank you!!!!
Hi Barbmag,
Yes, pvc-induced cardiomyopathy is rare. My doctor was wonderful in researching why I might have ended up with cardiomyopathy. At first, everyone thought my mitral regurgitation had worsened and the CM was a result of that. Turned out not to be the case. I was having very frequent PVC's for a long time before the CM came about.
RVOT is right ventricular outflow tachycardia, and LVOT is left entricular outflow tachycardia. Apparently, RVOT is very often successfully ablated.
The face that your heart is structually normal is GREAT!! I hear ya on the electrical problem...Life throws us a lot of curves for sure; it doesn't seem to get much easier : )
Extra beats do not always show up on an EKG since it is for such a short duration. The event monitors are really good for picking up the extra beats that don't occur daily. Are you recording the PVC's/PAC's? Have you been able to pick up any of the events that worry you? Try not to be afraid. You've got friends around here : )
Connie
Yes, pvc-induced cardiomyopathy is rare. My doctor was wonderful in researching why I might have ended up with cardiomyopathy. At first, everyone thought my mitral regurgitation had worsened and the CM was a result of that. Turned out not to be the case. I was having very frequent PVC's for a long time before the CM came about.
RVOT is right ventricular outflow tachycardia, and LVOT is left entricular outflow tachycardia. Apparently, RVOT is very often successfully ablated.
The face that your heart is structually normal is GREAT!! I hear ya on the electrical problem...Life throws us a lot of curves for sure; it doesn't seem to get much easier : )
Extra beats do not always show up on an EKG since it is for such a short duration. The event monitors are really good for picking up the extra beats that don't occur daily. Are you recording the PVC's/PAC's? Have you been able to pick up any of the events that worry you? Try not to be afraid. You've got friends around here : )
Connie
Gosh, I have gotten so much info from these posts! Thank you. Now I have a new concern and I will ask my cardio in Feb when I see him. I did not know that frequent bouts of PVC's could cause cardiomyopathy. Do you know if this is rare for this to happen? I guess age might be a factor and I am 62 so perhaps something for me to be concerned about???
Can I ask, what is RVOT and LVOT?
I have been told that my heart is structurally fine. Just this darn electrical prob and I have no idea what is causing this but I will try to find out from my dr. It's just that I get the feeling that he doesn't know. Can you always tell that from an EKG? I currently have an event monitor but so far, just episodes of PVC's and PAC's have occurred. Even those are scary!
Thank you so much!
Barbara
Can I ask, what is RVOT and LVOT?
I have been told that my heart is structurally fine. Just this darn electrical prob and I have no idea what is causing this but I will try to find out from my dr. It's just that I get the feeling that he doesn't know. Can you always tell that from an EKG? I currently have an event monitor but so far, just episodes of PVC's and PAC's have occurred. Even those are scary!
Thank you so much!
Barbara
I know what you mean about being frustrated. Seems no matter how much we do know about our arrythmias, each of us has our own unique set of circumstances. Try not to think of the arrythmia as an illness. Instead, tell yourself, it’s what makes “E” unique : - )
After having PVC’s for so long, I was pretty used to them and they didn’t really bother me TOO much. So, it wasn’t too big a deal when the Inderal lost its effectiveness. However, because the PVC’s were so frequent, I ended up with cardiomyopathy. That’s when it became very important to eliminate, or significantly reduce the number of PVC’s I was having. Enter…flecainide, rhythmol, ablation(s).
I went off of flecainide because of side effects to my central nervous system. I was having hand tremors, shakiness and VERY weird dreams. The flecainide worked very well at surpressing the PVC’s, but I hated the side effects. I tolerated the rhythmol much better. For me, the only drawback to switching was that I had to take the rhythmol 3X/day instead of 2X/day. Anyway, when I was on the rhythmol, I asked my doctor how long I would have to be on it. When she said, “forever” I reconsidered the ablation(s)!!
I’ve worn holter monitors as well as event monitors. I wore the holters for 24 hours and the event monitors for 30 days. The monitors caught way more events that I knew about! I mean, I felt tons of “events”, but not as many as the monitor picked up. I also had them while I was sleeping…weird!
After the first ablation, the holter picked up 6000 PVC’s in a 24 hour period. I knew I was having extra beats, but I didn’t know I was having that many. I’m not sure how frequent the NSVT was occurring. According to one report (the other reports are too vague), I had thousands of isolated PVC’s, thousands of couplets, a handful of runs and “many” episodes of bigeminy. The doctors could tell by looking at the EKG’s and the monitors that I was multifocal. They were pretty sure there were 2 dominant foci.
I had one ablation for RVOT and one for LVOT.
Since the second ablation, I only get handfuls of PVC’s and an occasional run. The cardiomyopathy resolved and my heart muscle function is back to normal. I have Inderal “just in case.” In the past 4 years, I have probably taken it less than 10x, mostly on travel days or high stress days.
Keep me posted!
Connie
After having PVC’s for so long, I was pretty used to them and they didn’t really bother me TOO much. So, it wasn’t too big a deal when the Inderal lost its effectiveness. However, because the PVC’s were so frequent, I ended up with cardiomyopathy. That’s when it became very important to eliminate, or significantly reduce the number of PVC’s I was having. Enter…flecainide, rhythmol, ablation(s).
I went off of flecainide because of side effects to my central nervous system. I was having hand tremors, shakiness and VERY weird dreams. The flecainide worked very well at surpressing the PVC’s, but I hated the side effects. I tolerated the rhythmol much better. For me, the only drawback to switching was that I had to take the rhythmol 3X/day instead of 2X/day. Anyway, when I was on the rhythmol, I asked my doctor how long I would have to be on it. When she said, “forever” I reconsidered the ablation(s)!!
I’ve worn holter monitors as well as event monitors. I wore the holters for 24 hours and the event monitors for 30 days. The monitors caught way more events that I knew about! I mean, I felt tons of “events”, but not as many as the monitor picked up. I also had them while I was sleeping…weird!
After the first ablation, the holter picked up 6000 PVC’s in a 24 hour period. I knew I was having extra beats, but I didn’t know I was having that many. I’m not sure how frequent the NSVT was occurring. According to one report (the other reports are too vague), I had thousands of isolated PVC’s, thousands of couplets, a handful of runs and “many” episodes of bigeminy. The doctors could tell by looking at the EKG’s and the monitors that I was multifocal. They were pretty sure there were 2 dominant foci.
I had one ablation for RVOT and one for LVOT.
Since the second ablation, I only get handfuls of PVC’s and an occasional run. The cardiomyopathy resolved and my heart muscle function is back to normal. I have Inderal “just in case.” In the past 4 years, I have probably taken it less than 10x, mostly on travel days or high stress days.
Keep me posted!
Connie
Thank you so much for your comments, it's such a relief to hear of a success!! It's so frustrating and we begin to feel so alone in this, that everyone else has simple illnesses and this one seems to have chosen my fiance for some reason.
I have a few more questions for you if you don't mind. First, why did you change off the flecainide onto rhythmol? Was it due to still having symptoms or because the side effects didn't go away? My fiance's metoprolol did not do a great job controlling it--he was on it for about 2 months and had PVC's all over the place, with some short runs too. That's why they decided to go flecainide after the EP study. He also experiences other symptoms besides just feeling his palpitations--he has dizziness (but usually not w/ a palpitation he can feel), insomnia from waking up feeling his heart beat abnormally, chest pain that is sometimes described as a squeezing feeling or a sharp pain but not where his heart is.
When they put you on a holter monitor, was it a loop event monitor or something different? My fiance, "E", has worn a loop event monitor two times in the last year and a half for 30 days each time. This last time I think his doctor did it not expecting to find anything, but E wasn't satisfied with how he was feeling and wasn't OK with just settling for a "well we don't think you have any reason to feel like your life's in danger". Then, surprise! The event monitor automatically caught an abnormality he had in his sleep...he didn't even know it happened. It made us wonder how many other times he had NSVT that we never knew about. On that event monitor it had been something like 12 days with it, so he kept it on the remaining days after our trip to the ER and introduction of metoprolol.
When you had the 6000 pvc's, was that over a period of 6-8 weeks? Did you feel them? Or were they happening and without your knowledge and then you found out how frequent they were after the results came in? Were they single PVC's? Couplets? Runs? How frequently did they catch your NSVT and how did they know it was multi-focal?
E's specialist believes he knows that it's coming from a location in the right ventricle, they're pretty sure of the area but that doesn't do much if we can't reproduce it in the lab.
After your 2nd ablation, what did you experience after? Any pvc's? Are you completely palpitation free now? And are you on any medications for it?
Thanks so much!!!!
I have a few more questions for you if you don't mind. First, why did you change off the flecainide onto rhythmol? Was it due to still having symptoms or because the side effects didn't go away? My fiance's metoprolol did not do a great job controlling it--he was on it for about 2 months and had PVC's all over the place, with some short runs too. That's why they decided to go flecainide after the EP study. He also experiences other symptoms besides just feeling his palpitations--he has dizziness (but usually not w/ a palpitation he can feel), insomnia from waking up feeling his heart beat abnormally, chest pain that is sometimes described as a squeezing feeling or a sharp pain but not where his heart is.
When they put you on a holter monitor, was it a loop event monitor or something different? My fiance, "E", has worn a loop event monitor two times in the last year and a half for 30 days each time. This last time I think his doctor did it not expecting to find anything, but E wasn't satisfied with how he was feeling and wasn't OK with just settling for a "well we don't think you have any reason to feel like your life's in danger". Then, surprise! The event monitor automatically caught an abnormality he had in his sleep...he didn't even know it happened. It made us wonder how many other times he had NSVT that we never knew about. On that event monitor it had been something like 12 days with it, so he kept it on the remaining days after our trip to the ER and introduction of metoprolol.
When you had the 6000 pvc's, was that over a period of 6-8 weeks? Did you feel them? Or were they happening and without your knowledge and then you found out how frequent they were after the results came in? Were they single PVC's? Couplets? Runs? How frequently did they catch your NSVT and how did they know it was multi-focal?
E's specialist believes he knows that it's coming from a location in the right ventricle, they're pretty sure of the area but that doesn't do much if we can't reproduce it in the lab.
After your 2nd ablation, what did you experience after? Any pvc's? Are you completely palpitation free now? And are you on any medications for it?
Thanks so much!!!!
I'm sorry about your fiance's NSVT, but so happy to hear the monitor caught the event. That's too bad about the EP study...blah! Excellent that your fiance has a structurally normal heart!! Did the metoprolol ever work? Has a different beta blocker been suggested? Does he have enought "events" that the doctors feel they can identify the source? It's tough if the episodes are few and far between.
The XL medications are great if they work for him. I had some luck with taking Inderal that way, but eventually, it became less effective. Flecainide defnitley helped, but I did NOT like the side effects. I was also taking 50mg twice daily, but only took it for about 3 months. I had no proarrythmic effects at all. Was he started on the medication while in the hospital? That's how I started so I could be monitored 24/7 for a few days. After about 3 months, I was switched to rhythmol which turned out to have fewer side effects. I took that for about 4 months and then decided to try for an ablation. I knew ahead of time it might take more than one procedure because I was multifocal.
I had an ablation at the beginning of August (2003) and wore a holter monitor 6-8 weeks later. It recorded about 6000 PVC's. After having had many more pvcs in a 24 hour period, I thought that was OK. The doctor suggested a second procedure. In November, I had a second ablation and it was a winner!! It has been 4 years, and I'm still doing well. Like your fiance, I had episodes of NSVT, but technically, no VT.
Good luck to you both!
Connie
We'll discuss all this with the doctors, of course, but I cannot find ANY research articles or anything about the success rate of 2nd attempts.
The XL medications are great if they work for him. I had some luck with taking Inderal that way, but eventually, it became less effective. Flecainide defnitley helped, but I did NOT like the side effects. I was also taking 50mg twice daily, but only took it for about 3 months. I had no proarrythmic effects at all. Was he started on the medication while in the hospital? That's how I started so I could be monitored 24/7 for a few days. After about 3 months, I was switched to rhythmol which turned out to have fewer side effects. I took that for about 4 months and then decided to try for an ablation. I knew ahead of time it might take more than one procedure because I was multifocal.
I had an ablation at the beginning of August (2003) and wore a holter monitor 6-8 weeks later. It recorded about 6000 PVC's. After having had many more pvcs in a 24 hour period, I thought that was OK. The doctor suggested a second procedure. In November, I had a second ablation and it was a winner!! It has been 4 years, and I'm still doing well. Like your fiance, I had episodes of NSVT, but technically, no VT.
Good luck to you both!
Connie
We'll discuss all this with the doctors, of course, but I cannot find ANY research articles or anything about the success rate of 2nd attempts.
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