Aa
when is enough
When is enought? Have I exgausted all my options??? Im begining to think that I really cant do this anymore.
Recap, pacs, svt, pvcs, aivr, and nsvt. I have had to attempted ablations which they could not induce nsvt. Have had all the test meds dont work for me. Help!! last month I had four nsvt runs in a week saturday had a bad day and tonight had a pretty good run of it again. I cant do this anymore. Do I go for a third eps or do I just give up and live with it which apparently I cant... I just dont know what to do anymore. Any suggestions from anyone would be great.
wmac
Recap, pacs, svt, pvcs, aivr, and nsvt. I have had to attempted ablations which they could not induce nsvt. Have had all the test meds dont work for me. Help!! last month I had four nsvt runs in a week saturday had a bad day and tonight had a pretty good run of it again. I cant do this anymore. Do I go for a third eps or do I just give up and live with it which apparently I cant... I just dont know what to do anymore. Any suggestions from anyone would be great.
wmac
Sorry, I was out of town and just saw your response to me. I guess pretty much mine is kinda the reverse of yours. I had a loop recorder also, and every event that I bothered to record due to fast rate, was SVT! My NSVT is not felt because the focus is so low in the ventricle that a pulse is not generated, which is; actually worse. If I could feel it that would be better. My SVT, being above the ventricle, does generate a pulse although weaker than normal of course, with a rate up to 240 bpm. So I can feel pretty confident that mine, if felt, IS SVT! (this is kind of funny if you think about it!). I also have the AIVR, which I CAN feel and which definitely feels way different than the others. It really feels weird and very distinctive and I would bet you $5k that I could identify it correctly. That rate is about 90/min. whereas my usual resting heart rate is about 54.
For me, I do have structural heart disease and one failed ablation for the SVT due to too close to the AV node and would need a pacer which they know already would be extremely difficult to implant due to congenital vessel abnormalities. (been there, done that already!) So I just ignore it all, and take my Coreg and Dig, and leave it up to the Lord as to when I am called.
For me, I do have structural heart disease and one failed ablation for the SVT due to too close to the AV node and would need a pacer which they know already would be extremely difficult to implant due to congenital vessel abnormalities. (been there, done that already!) So I just ignore it all, and take my Coreg and Dig, and leave it up to the Lord as to when I am called.
I wasn't happy with my EP doctors so I got a second opinion. I did some research and found that the folks at UC San Francisco were experts on the electrical activity of the heart. I had my charts, etc sent up to them and they were very receptive to meeting with me. So I decided it was worth the expense to fly 1 hour to SF to see what they had to say and I don't regret it one bit. I would suggest that you get a second opinion...
Rob
Rob
You know im thinking ok so I do this and say I got fixed. But for how long I hear that if they fix your nsvt that it can come back?
Any one know anything about this?
Any one know anything about this?
The success rate of usually quoted at 80% and upward. I believe when they talk about success, that does not mean 80% are fixed the first try.
I had an appointment scheduled with doctor weiss at the utah heart clinic for weds. But I cancelled it no one could go with me its a 8 hr drive. But now my husband says he can go so first thing tures morning im gonna see if I can get that appointment back. So I woke up this morning and boom there it went again. It was extremly fast this time. Crazy stuff. But yes I survived yet another one! Im gonna talk about an ablation with him go for lucky number three. But I have read and my regular cardio says that even if they did ablate it it would come back. Does anyone know the sucess rate of it not coming back? Is it worth it to do it again maybe not get fixed again or be fixed and have it come back or be fixed for good?? The million dollar question here? All replies would be helpful.
thanks
wendy
thanks
wendy
I was reading your posts here and wondered what are the side affects for anti-arrhythmics? My doctor wants me to take flecainide or ablate for pvc's and nsvt because I have so many. He said that from the monitor he could tell they were from the right venticular outflow tract. He also thinks I have Sinus Node Dysfunction but that is another issue. Should I take the Flecainide? No one seems to have much relief with the anti-arrythmic drugs. I just don't want to start another drug that does not work. I was on Nadolal and then toprol and neither helped anything.
It's very frustrating to hear the same thing over and over again, benign, it's not going to kill you, learn to live with it, etc, but to still have a problem that seems to take every ounce of your strength to combat--every day, that's just hard to swallow isn't it?
In my own situation, I believe I am no different than a diabetic who has to live with that condition, or a person who has to live with M.S.,((***I know pvcs are not the same, I know that I am more fortunate)) But like them, I just have to keep doing all the things that are supposed to help.
I think you know my situation is similar to yours in terms of pvcs frequency and pattern, nsvt, and possible aivt, so I'm not talking out of the blue. And you might know I'm the worst medication taking person out there, but recently have found the beta-blocker acebutolol to give some relief. I also take .125mg of xanax as needed because some days just seem unbearable. That helps too. I just want to encourage you to keep trying, something.
In my own situation, I believe I am no different than a diabetic who has to live with that condition, or a person who has to live with M.S.,((***I know pvcs are not the same, I know that I am more fortunate)) But like them, I just have to keep doing all the things that are supposed to help.
I think you know my situation is similar to yours in terms of pvcs frequency and pattern, nsvt, and possible aivt, so I'm not talking out of the blue. And you might know I'm the worst medication taking person out there, but recently have found the beta-blocker acebutolol to give some relief. I also take .125mg of xanax as needed because some days just seem unbearable. That helps too. I just want to encourage you to keep trying, something.
Yes im afraid of the episodes! I do take .5mg ativan twice daily apparently its not enough. the docs what me to do 1mg two -three times daily little nervous about that one.
So I went and saw the PA/ep who works directly under my cardio/ep. She flat out said this is not going to kill you. Im like ya well tell me that when its happening. So after much talking she said what you want another ablation what do you want I said I want to be better and yes I would. Then she tells me that none of the cardio at the Idaho cardiology do vt ablations. MM my cardio never told me that before. She said we send all of them to the mayo. mm Guess thats why my cardio refused to do it. It makes me wonder???? Then we discussed meds and she said that antidepressants may be best for me and that sometimes it does help people with there arrythmias.. I said well I took a 1/4 of a 25mg zoloft and it knocked me out for 2andhalf hours. But that is what her suggestion is. Give it a month and then call if I decide to do a beta. I also said so why wont you guys give me another monitor I said its no skin off your back my insurance and I pay for it what up with that? She said well Dr. Marks and I discussed it and decided you dont need it because you have worn it alot and we have all the info we need and its not going to change how we treat you or anything else. I said well Im wondering if there isnt something new going on because of the frequency , then she said well if you want I can talk to Dr. Marks again i said forget it.
I had two differrent cardio/ep doc at the university who did the eps. Dr Wall was the first and then Dr. Klien was the second. And Dr. Freeman was the main one I saw.
I guess the ending to this one is that I have to live with this forever and get over it.
Its not going to be easy and it sure makes the quality of life really hard at times.
Sweetwaterguy I also saw Dr Weiss at the utah heart clinic. He said if I talked long enough he would do a eps on me.
So I went and saw the PA/ep who works directly under my cardio/ep. She flat out said this is not going to kill you. Im like ya well tell me that when its happening. So after much talking she said what you want another ablation what do you want I said I want to be better and yes I would. Then she tells me that none of the cardio at the Idaho cardiology do vt ablations. MM my cardio never told me that before. She said we send all of them to the mayo. mm Guess thats why my cardio refused to do it. It makes me wonder???? Then we discussed meds and she said that antidepressants may be best for me and that sometimes it does help people with there arrythmias.. I said well I took a 1/4 of a 25mg zoloft and it knocked me out for 2andhalf hours. But that is what her suggestion is. Give it a month and then call if I decide to do a beta. I also said so why wont you guys give me another monitor I said its no skin off your back my insurance and I pay for it what up with that? She said well Dr. Marks and I discussed it and decided you dont need it because you have worn it alot and we have all the info we need and its not going to change how we treat you or anything else. I said well Im wondering if there isnt something new going on because of the frequency , then she said well if you want I can talk to Dr. Marks again i said forget it.
I had two differrent cardio/ep doc at the university who did the eps. Dr Wall was the first and then Dr. Klien was the second. And Dr. Freeman was the main one I saw.
I guess the ending to this one is that I have to live with this forever and get over it.
Its not going to be easy and it sure makes the quality of life really hard at times.
Sweetwaterguy I also saw Dr Weiss at the utah heart clinic. He said if I talked long enough he would do a eps on me.
University of Utah has an excellent reputation, but you also have another high quality hospital in your area staffed by exceptionally trained cardiologists. Intermountain, also known as LDS hospital, did my ablation. I have great confidence in them.
I would suggest you have been cared for by excellent doctors at the University of Utah hospital, but your case seems exceptional and difficult to diagnose and treat. A second opinion from the EP's at Intermountain might ease your concerns, and who knows--might yield positive results.
I would suggest you have been cared for by excellent doctors at the University of Utah hospital, but your case seems exceptional and difficult to diagnose and treat. A second opinion from the EP's at Intermountain might ease your concerns, and who knows--might yield positive results.
Hi wmac,
I don't think it's realistic to ask you to "ignore" the ectopics. However, there are ways to learn to "accept" them. Are you afraid of the episodes, or would you say that you are more physically uncomfortable because of them? I'm wondering if an anti-anxiety medication might also help during difficult times.
I don't know how long (number of beats) my episodes of nsvt were, but I could definitely feel them. Did the same doctor do both of your EPS'? My doctor used the monitors to determine if she thought the foci were ablatable. Of course, the EPS would be the determining factor. I was multi-focal, so they ablated a couple of different areas; two procedures. The doctors were nearly certain there were two predominant (4 altogether) foci.
I don't think it's realistic to ask you to "ignore" the ectopics. However, there are ways to learn to "accept" them. Are you afraid of the episodes, or would you say that you are more physically uncomfortable because of them? I'm wondering if an anti-anxiety medication might also help during difficult times.
I don't know how long (number of beats) my episodes of nsvt were, but I could definitely feel them. Did the same doctor do both of your EPS'? My doctor used the monitors to determine if she thought the foci were ablatable. Of course, the EPS would be the determining factor. I was multi-focal, so they ablated a couple of different areas; two procedures. The doctors were nearly certain there were two predominant (4 altogether) foci.
I have worn the king of hearts so many times its not funny I have also had the 24 hr monitor several times I also had a loop recorder implanted for 10 months. So whenever I have had these episodes I of course recorded them and each time I have had the nsvt I have felt them and of course they were recorded. So with that said I pretty much know what they feel like. I would call them in and say I had a nsvt run and they would call back with the results and say yes you did x amount of beats this time. The two arrthymias that I have aivr and the nsvt do feel the same but of course one is faster than the other those are the two that are hard to distinguish between because my nsvt never feels fast just long pauses and it has actually been up to 187 bpm. I sometimes wonder if all of our nsvt that everyone has feels the same for everyone.
Yes they tell me to ignore it but how can I when I am having so many episodes. Not only that its really hard to work and hold your composure when this is happening. Im sorry but this is really something I cant ignore.
So when your having the SVT maybe its really nsvt? How do you know which one your having if you have never felt the nsvt?
Yes they tell me to ignore it but how can I when I am having so many episodes. Not only that its really hard to work and hold your composure when this is happening. Im sorry but this is really something I cant ignore.
So when your having the SVT maybe its really nsvt? How do you know which one your having if you have never felt the nsvt?
I'm curious as to how you know you had these recent episodes of NSVT. Having had all sorts of arrhythmias myself, I don't know how you could tell the difference between NSVT and SVT. The only way to know for sure is to capture it on a monitor. Do you presently have an event recorder? Didn't they tell you that the NSVT was to be ignored and that it won't hurt you? I know it is very difficult to ignore this stuff but it can be done. I guess I am lucky in that my NSVT is one I have never felt when it was captured accidentally a number of times, just the SVT, which can be an annoyance.
Well if I get no action and or satisfaction Im afraid im just going to have to fire my cardio/ep.. They work for us right??? I just had another little episode. geeeezzzzz
I swear im going nuts. Ya well my husband says I should just trust the doc and live with it.. LIVE WITH IT!! mmm Alot easier said than done. Its been six years and my quality of life has gone down hill fast and I cant take much more of this.
Like I said I have had two attempted ablations so do you guys think that if I went for the third one id be pushing my luck??
I swear im going nuts. Ya well my husband says I should just trust the doc and live with it.. LIVE WITH IT!! mmm Alot easier said than done. Its been six years and my quality of life has gone down hill fast and I cant take much more of this.
Like I said I have had two attempted ablations so do you guys think that if I went for the third one id be pushing my luck??
I had sustained VTach, it was captured on Holter monitor several times. I had an ICD implanted, which carried numerous problems of its own. I tried most of the anti-arrhythmic drugs (amiodarone, rythmol, fleciadine, verapamil, lidocaine, quinidine, and some others.) These drugs carry very bad side effects, some may not be apparent immediately.
No matter how we describe the misery that are experienced, there's just 3 options:
1. You do nothing
2. You try drugs
3. You try ablation
Ablation procedures have evolved and improved dramatically over the past 10 years. Eventually it will be first line treatment. There are about 80,000 ablations a year performed. Not all doctors are the same. Think of yourself as a Rolls Royce and not a chevy. Obviously, you would not have the guy down at the local gas station work on your Rolls Royce. Your heart is like a Rolls Royce.
I ended up at the Cleveland Clinic for two ablations. The doctors there are a cut above the rest. They know and understand the problems of the heart much better. If their techniques don't work, they know why. They also do epicardial abaltions; one of four palces in the country that does them - as far as I know.
It takes 3-4 months to get an interview, and in case of Dr. Andrea he was booked for 9 months. So, if you think you deserve the best, then get movin!
No matter how we describe the misery that are experienced, there's just 3 options:
1. You do nothing
2. You try drugs
3. You try ablation
Ablation procedures have evolved and improved dramatically over the past 10 years. Eventually it will be first line treatment. There are about 80,000 ablations a year performed. Not all doctors are the same. Think of yourself as a Rolls Royce and not a chevy. Obviously, you would not have the guy down at the local gas station work on your Rolls Royce. Your heart is like a Rolls Royce.
I ended up at the Cleveland Clinic for two ablations. The doctors there are a cut above the rest. They know and understand the problems of the heart much better. If their techniques don't work, they know why. They also do epicardial abaltions; one of four palces in the country that does them - as far as I know.
It takes 3-4 months to get an interview, and in case of Dr. Andrea he was booked for 9 months. So, if you think you deserve the best, then get movin!
my dr always gives me a heart montor it not cost them anything, my insurance pays it and thats what makes me feel better so why not, hum, maybe you need another dr.
The best way I've been able to describe it is this: it feels like I have a constant low grade flu because I always feel a little teenie bit dizzy, and just not quite right, not really sick, but not well......and on top of all that, when the pvcs are bad, it feels like someone is turning the lights on and off 20 times a minute, I can't concentrate, I'm distracted. Try to ignore and live with that! (as they all suggest I ((we)) do).
When I described that sensation to the EP, and was about to stand up to demonstrate the light switch going on and off 20xmin, he looked startled. I don't blame him for being detached, it's what they do, but I also know he (they) don't really understand either.
I know that people have different triggers, I know that people don't respond the same way to medications, but have you tried the beta-blocker acebutolol? I tried three BB before this one, so I wasn't happy to try yet another and that this was all that was going to be offered to me. But it really has stopped the multiple pvcs, and it seems the nsvt is what you are most symptomatic with. It couldn't hurt to try it could it? I mean if you haven't already tried it. I only suggest this because I really want you to keep trying to find something that gives you some, any, relief.
When I described that sensation to the EP, and was about to stand up to demonstrate the light switch going on and off 20xmin, he looked startled. I don't blame him for being detached, it's what they do, but I also know he (they) don't really understand either.
I know that people have different triggers, I know that people don't respond the same way to medications, but have you tried the beta-blocker acebutolol? I tried three BB before this one, so I wasn't happy to try yet another and that this was all that was going to be offered to me. But it really has stopped the multiple pvcs, and it seems the nsvt is what you are most symptomatic with. It couldn't hurt to try it could it? I mean if you haven't already tried it. I only suggest this because I really want you to keep trying to find something that gives you some, any, relief.
So I called my cardio this morning and lucky me I get to the PA/ep to the cardio...
I asked for a king of hearts and they said no because I have had so many, but I have not had one for the past two years. Really p*** me off!! I wish that they had to deal with this so then maybe stuff would start to happen for all of us. The today said well what does it feel like? mm well gee it feels like **** makes me feel like **** for the whole day feels like im gonna die what do you think. That makes me so crazy because you try to describe it and the more you do then they really think your crazy. There is no easy way to describe it.
I asked for a king of hearts and they said no because I have had so many, but I have not had one for the past two years. Really p*** me off!! I wish that they had to deal with this so then maybe stuff would start to happen for all of us. The today said well what does it feel like? mm well gee it feels like **** makes me feel like **** for the whole day feels like im gonna die what do you think. That makes me so crazy because you try to describe it and the more you do then they really think your crazy. There is no easy way to describe it.
sorry to hear of all your struggles. I am exactly where you're at! I live with nsvt almost daily, pvc's daily, and thats enough to run me crazy! I feel for you, I struggle everyday with these stupid things,I harrass my doctor endlessly. He gets annoyed with me, but I keep on pushing for answers. I need to know whats causing this, somedays I feel hopeless. I've had one ep study but they weren't able to induce any nsvt, so I was sent on my UNmerry way, lol, I hope that someday we can get some answers, until then, God bless you and I hope you have more good days than bad!
I'm sorry you are still having to deal with all of this, despite your best efforts to have it taken care of.
I can only say hang in there, I actually do know how you feel.
I have high frequency pvcs (over 20,000/day), and this year I've been dealing with the long multiples, at one point I counted 62 pvcs. I scheduled an appointment with an EP and, mentally I was already prepared to have an ablation. But that's not how it all went.
Instead I got an event monitor. I couldn't capture anything much longer than 10 in a row, so they suggested the long strings could be AIVR because my heart rate is usually 65-90bpm.
I was disappointed when the EP said he would never consider an ablation, and would not RX anti-arrythmics. Instead I got acebutolol (BB) and it STOPPED the multiples. Really, I haven't had any since and I don't take it all that consistently. Have you tried acebutolol. I've been told it's not like the other beta-blockers.
Truly, I know how desperate you can feel with all these weird beats, it's enought to drive the strongest willed person bonkers. But do keep trying to find some solution. Physically they've probably said your heart is ok right? That's what keeps me fighting. I hope that you can keep fighting too. Every time I think I'm about to give up, I come here for more support.
I can only say hang in there, I actually do know how you feel.
I have high frequency pvcs (over 20,000/day), and this year I've been dealing with the long multiples, at one point I counted 62 pvcs. I scheduled an appointment with an EP and, mentally I was already prepared to have an ablation. But that's not how it all went.
Instead I got an event monitor. I couldn't capture anything much longer than 10 in a row, so they suggested the long strings could be AIVR because my heart rate is usually 65-90bpm.
I was disappointed when the EP said he would never consider an ablation, and would not RX anti-arrythmics. Instead I got acebutolol (BB) and it STOPPED the multiples. Really, I haven't had any since and I don't take it all that consistently. Have you tried acebutolol. I've been told it's not like the other beta-blockers.
Truly, I know how desperate you can feel with all these weird beats, it's enought to drive the strongest willed person bonkers. But do keep trying to find some solution. Physically they've probably said your heart is ok right? That's what keeps me fighting. I hope that you can keep fighting too. Every time I think I'm about to give up, I come here for more support.
It sounds like this is seriously affecting your life so if I was you, I wouldn't give up just yet. Is there another EP doctor you could see? How many different meds have you tried?
I've had 3 ablations (total of 38 burns to the heart) but still have my PAC's, PVC's, PSVT (usually less than a minute) and some NSVT (I found out about that at the stress test). Although my heart skips and dances around every day I decided I didn't want any more ablations. I found I can take Diltiazem if I need to (like recently while my Dad was dying) but it does have side effects (initial headaches for 2 weeks and feeling very foggy and fatigued). Still, I'd rather live with my goofy rhythms than go in to the doctor again. I'm tired of all that.
Until your doctor states clearly there's nothing more he can do, keep asking. There may come a day when they tell you your heart will never be perfectly quiet and normal. But as long as you're feeling so bad, keep looking for answers.
I've had 3 ablations (total of 38 burns to the heart) but still have my PAC's, PVC's, PSVT (usually less than a minute) and some NSVT (I found out about that at the stress test). Although my heart skips and dances around every day I decided I didn't want any more ablations. I found I can take Diltiazem if I need to (like recently while my Dad was dying) but it does have side effects (initial headaches for 2 weeks and feeling very foggy and fatigued). Still, I'd rather live with my goofy rhythms than go in to the doctor again. I'm tired of all that.
Until your doctor states clearly there's nothing more he can do, keep asking. There may come a day when they tell you your heart will never be perfectly quiet and normal. But as long as you're feeling so bad, keep looking for answers.
I'm sorry you are still dealing with all the "weird" beats. : (
Has your doctor ever considered anti-arrythmics? I know they are potent, but perhaps a reprieve from the extra beats would be helpful.
Prior to your ablations, did the doctor feel confident that he could induce the nsvt? What does he/she say about the episdoes?
It took two ablations for my nsvt, but I was multi-focal, so it was a little different. What about getting an e-opinion from the Cleveland Clinic? There is a fee, but because you are so stressed, it might be worth the money.
I hope today is a good day.
connie
Has your doctor ever considered anti-arrythmics? I know they are potent, but perhaps a reprieve from the extra beats would be helpful.
Prior to your ablations, did the doctor feel confident that he could induce the nsvt? What does he/she say about the episdoes?
It took two ablations for my nsvt, but I was multi-focal, so it was a little different. What about getting an e-opinion from the Cleveland Clinic? There is a fee, but because you are so stressed, it might be worth the money.
I hope today is a good day.
connie
Thanks for your comment. I did go to the university of utah twice for my to attempted ablations with no luck. Did you have Vtach or nonsustained vtach? Supposeably mine is from the same foci as well. They just cant induce it. Where did you go for your ablation. When you say four ablations do you mean four epstudies or four burns? So now you are vtach free? That is awesome. Please tell me more.
wendy
wendy
I did not have all the conditions you got. I had bad PVCs and V-tach from the same foci. I also tried all the meds and ended up with numerous intolerable side effects. So, it took 4 ablations to get me squared away. I experienced so much misery that my fear was not that I would die but that I would continue to live with PVCs and VT. It has been 9 months now and so far I've been PVC-free. With the problems you got you should go to a research hospital, where they have more advanced procedures and properly trained doctors. Don't give up!
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