Aa
Is there hope for us??
Hello! I just discovered this site. I am 39 and have been dealing with PVC's for about 5 years now. I am at a point where they have taken over my life. The worrying and anxiety is always there. I have had the ekg, echo, stress test, and holter moniter. The doctors assure me they are benign and "nothing to worry about"- easy for them to say! I have tried different beta blockers which didn't seem to have much effect. I have now been on Flecanide for about 1 1/2 year. I don't think it is helping either and now I am hearing all of these horrible things about the drug. I'm at a point where I don't know what to do, I am considering getting help for the anxiety, but if the counselor has never experienced these I'm skeptical if they can help. I hate going to bed at night because laying down is often when they trigger.
One question I have, in reading lots of your comments, many of you describe the pvc as a skipped beat. I have many of these, but I think I could deal with these. What I often get also though is a huge fluttering, or quivering that lasts several seconds. Do any of you experience this massive flutterings?
Also, how do you know when you have done all of the testing necessary. Of course when they put the monitor on they never seem to catch the bad ones, so I worry they are not really seeing what is going on. It is so frustrating when the doctors treat you like you are overreacting and wonder why you can't just take their word for it that everything is fine.
Sorry I am rambling, I can't tell you how helpful it is to have found this site and listen to all of you. Going through this I feel so alone and like no one understands. It's so nice to know that there are people who understand what I am going through.
I appreciate any helpful thoughts..........
Thanks for listening!!
One question I have, in reading lots of your comments, many of you describe the pvc as a skipped beat. I have many of these, but I think I could deal with these. What I often get also though is a huge fluttering, or quivering that lasts several seconds. Do any of you experience this massive flutterings?
Also, how do you know when you have done all of the testing necessary. Of course when they put the monitor on they never seem to catch the bad ones, so I worry they are not really seeing what is going on. It is so frustrating when the doctors treat you like you are overreacting and wonder why you can't just take their word for it that everything is fine.
Sorry I am rambling, I can't tell you how helpful it is to have found this site and listen to all of you. Going through this I feel so alone and like no one understands. It's so nice to know that there are people who understand what I am going through.
I appreciate any helpful thoughts..........
Thanks for listening!!
I feel exactly how you feel. Frustrated and exhausted. I've had PVC's 15 years, they would come and go. Before this last strech I didn't have anything for 3-4 years. For the past 2 years they have been relentless. I will have some quieter moment during the day, especially when I'am busy. But when I take a rest or try to sleep at night they really like to get going.
I ask my Dr. for a echo, holter and a stress echo once a year, That seems to do it for me. As long as they are not finding anything new, I can live with those results. So far everything comes back OK. I also go to the cardio every 3 months for an EKG. I also take my medicine,it dosn't get rid of them but it helps, sometimes. My EP said as long as your heart is structurally OK flecanide is a very safe drug. But if it's not working anymore tell your Dr. I agree with momot3 the fluttering is usually back to back PVC's. The're very quick ones.
I ask my Dr. for a echo, holter and a stress echo once a year, That seems to do it for me. As long as they are not finding anything new, I can live with those results. So far everything comes back OK. I also go to the cardio every 3 months for an EKG. I also take my medicine,it dosn't get rid of them but it helps, sometimes. My EP said as long as your heart is structurally OK flecanide is a very safe drug. But if it's not working anymore tell your Dr. I agree with momot3 the fluttering is usually back to back PVC's. The're very quick ones.
Great comments and suggestions from Joybell : )
Have you ever worn an event monitor? It's generally worn for about 30 days and it gives you the chance to "record" any fluttering or weird feelings. Next, you transmit the data over the phone line and the doctor will get a printout of your heart's activity duirng the "event." They can be very effective at caliming our nerves : )
As for the weird sensations, it's possible that you are feeling 2 or more PVCs back-to-back. That sometimes gives the feeling of something fluttering. When I have a run of the PVCs (NSVT - non sustained ventricular tachycardia), it feels as though my heartberat is out of sync, and like it's trying to catch up with itself. The good news is with a structurally normal heart, it is still bening. Weird, nonetheless.
You are definitely not alone and this is a terrific place to visit and talk with others who know exactly what you're dealing with. Welcome to the Heart Forums!
Connie
Community Leader
Have you ever worn an event monitor? It's generally worn for about 30 days and it gives you the chance to "record" any fluttering or weird feelings. Next, you transmit the data over the phone line and the doctor will get a printout of your heart's activity duirng the "event." They can be very effective at caliming our nerves : )
As for the weird sensations, it's possible that you are feeling 2 or more PVCs back-to-back. That sometimes gives the feeling of something fluttering. When I have a run of the PVCs (NSVT - non sustained ventricular tachycardia), it feels as though my heartberat is out of sync, and like it's trying to catch up with itself. The good news is with a structurally normal heart, it is still bening. Weird, nonetheless.
You are definitely not alone and this is a terrific place to visit and talk with others who know exactly what you're dealing with. Welcome to the Heart Forums!
Connie
Community Leader
Hi Webes
I'm 67 years old and suffer with all of the above plus AF.What can I say..of course it's damn scarey, but what are we scared of? Why won't we say it...dying, dropping off the planet, kicking the bucket. We all die of something...car crash,heart attack, stroke, violence...but in the end we all die of death.
Don't be afraid to be afraid, even the tiniest spider is scared ie:takes off when it senses danger to itself.
When you get your PVC/palpitations... try and not focus on them, if you do you tense up and your heart beats faster and it's like being on a roller coaster.you will learn to live with them I promise, but in the meantime if you feel you need to go to ER go...eventually it will become a place you'd do anything not to be at.
When you say the monitor never catches the bad ones, might that mean it's because mostly they are good ones.
As for the Doctors... some of them are so filled with their own importance and control they will never understand, but mostly they are just ordinary people learning a job and who sometimes lack the social skills necessary when dealing with frightened people.
Take HEART...it's a very strong little pump and it takes a lot to stop it.
And finally...when you really feel down get on to the forum and chat, or have a look at some of the other forums on this great site and realise you are not alone.
Take Care
Joy From OZ
I'm 67 years old and suffer with all of the above plus AF.What can I say..of course it's damn scarey, but what are we scared of? Why won't we say it...dying, dropping off the planet, kicking the bucket. We all die of something...car crash,heart attack, stroke, violence...but in the end we all die of death.
Don't be afraid to be afraid, even the tiniest spider is scared ie:takes off when it senses danger to itself.
When you get your PVC/palpitations... try and not focus on them, if you do you tense up and your heart beats faster and it's like being on a roller coaster.you will learn to live with them I promise, but in the meantime if you feel you need to go to ER go...eventually it will become a place you'd do anything not to be at.
When you say the monitor never catches the bad ones, might that mean it's because mostly they are good ones.
As for the Doctors... some of them are so filled with their own importance and control they will never understand, but mostly they are just ordinary people learning a job and who sometimes lack the social skills necessary when dealing with frightened people.
Take HEART...it's a very strong little pump and it takes a lot to stop it.
And finally...when you really feel down get on to the forum and chat, or have a look at some of the other forums on this great site and realise you are not alone.
Take Care
Joy From OZ
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