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PVCs - Where to go from here
BACKGROUND:
I am a 32-year-old 5’3, 110 pound female. My diagnoses are: PVCs (left ventricle), mild mitral valve prolapse, PACs, sinus arrhythmia, sinus bradycardia, sinus tachycardia, asthma, and scoliosis (spinal fusion 2/11/1988). I have had daily runs of ventricular trigeminy and ventricular bigeminy since July 2010. They have lasted as long as eight hours. I finally made an appointment with an electrophysiologist in Toledo in October because the palpitations, lightheadedness, fatigue, and shortness of breath were getting unmanageable. I do not smoke, take recreational drugs, drink caffeine or alcohol, or anything of that nature. After the results of a 30-day event monitor came back in early December, my EP ordered a stress test and a Holter. Fortunately for me, but unfortunately for diagnostic purposes, I ended up having an unusually good day in terms of symptoms when I had the Holter and it only showed 10,000 PVCs. That is still a fair number. At my next appointment, when my EP reviewed the Holter and the stress test and I let him know that my symptoms were getting worse, he said “I really need to get in there to see what’s going on.” He also said that he thought he could “find at least a few spots to ablate.” I asked him if he could tell which side the PVCs were coming from and he said he thought the left. Because I was hesitant to consent to the EPS and ablation at that point, he put me on 12.5 mg Toprol. I had to go off of it within three days because I could not tolerate it.
I came to my next appointment with a list of questions about the ablation and I was prepared to consent. My EP walks into the room and says “I will only do it if you can’t live with the PVCs.” There were no other intervening tests that could account for his change in tone. Anyway, after going back and forth a few times I finally had the EPS on Monday, March 7. For whatever reason, there were no PVCs at baseline, so he had to induce them with Isuprel. He came out of the control center and told me that they were coming from the left side and that he was not going to do the ablation because it was pose “too much of a risk to inflate the balloon in someone with such a small frame.” He also let me know that they were “severely limited in what we can do because of your past paradoxical reaction to Versed.” He used Demerol instead which immediately suppressed the PVCs for the rest of the study. There may have been a few, but the Demerol definitely toned them down. Even after he decided not to do the ablation, he put one catheter in my right femoral vein and did the pacing and some other things.
QUESTIONS:
--I am the same size now as I was in December. As I related above, at that time my EP thought he could find at least a few spots to ablate and he thought they would be in the left ventricle. On Monday, he would not do the ablation because of the dangers inherent in left ventricle ablations in someone with a “small frame.” He is inconsistent and inconsistent about important things. It honestly seems like a situation where my case is too complex for him and their facility, but he does not want to admit it. My friends, many of who are in the medical field are encouraging me to seek a second opinion if not switch doctors completely. Based on the evidence, would you recommend this as well? I am only about two hours from the Cleveland Clinic and I know that they do pediatric ablations, so they would have a smaller balloon if that is needed.
--I had a paradoxical reaction to Versed 11 years ago. On Monday, they used 75mg of Demerol and that immediately stopped the PVCs. Is it possible for a person to have a paradoxical reaction to a drug and then have them react normally to it years later? My EP made a huge deal of how important it was to use Versed.
--My EP is now suddenly blaming all of my symptoms on the mitral valve prolapse. He said the MVP was “mild.” I may be missing something, but that does not make sense. Am I missing something?
--My EP scheduled me for a TTT on Tuesday. Is there a doctor present for the test? I know they sometimes use Isuprel to increase the heart rate, and that would induce a long run of PVCs in me and possible fainting if I am tilted up on the table. I realize that the purpose of the test is to induce syncope, but because the arrhythmia is so frequent with me and I do have attendant symptoms it might be good if a medical professional were in the room just in case!
Thank you
Jenn
I am a 32-year-old 5’3, 110 pound female. My diagnoses are: PVCs (left ventricle), mild mitral valve prolapse, PACs, sinus arrhythmia, sinus bradycardia, sinus tachycardia, asthma, and scoliosis (spinal fusion 2/11/1988). I have had daily runs of ventricular trigeminy and ventricular bigeminy since July 2010. They have lasted as long as eight hours. I finally made an appointment with an electrophysiologist in Toledo in October because the palpitations, lightheadedness, fatigue, and shortness of breath were getting unmanageable. I do not smoke, take recreational drugs, drink caffeine or alcohol, or anything of that nature. After the results of a 30-day event monitor came back in early December, my EP ordered a stress test and a Holter. Fortunately for me, but unfortunately for diagnostic purposes, I ended up having an unusually good day in terms of symptoms when I had the Holter and it only showed 10,000 PVCs. That is still a fair number. At my next appointment, when my EP reviewed the Holter and the stress test and I let him know that my symptoms were getting worse, he said “I really need to get in there to see what’s going on.” He also said that he thought he could “find at least a few spots to ablate.” I asked him if he could tell which side the PVCs were coming from and he said he thought the left. Because I was hesitant to consent to the EPS and ablation at that point, he put me on 12.5 mg Toprol. I had to go off of it within three days because I could not tolerate it.
I came to my next appointment with a list of questions about the ablation and I was prepared to consent. My EP walks into the room and says “I will only do it if you can’t live with the PVCs.” There were no other intervening tests that could account for his change in tone. Anyway, after going back and forth a few times I finally had the EPS on Monday, March 7. For whatever reason, there were no PVCs at baseline, so he had to induce them with Isuprel. He came out of the control center and told me that they were coming from the left side and that he was not going to do the ablation because it was pose “too much of a risk to inflate the balloon in someone with such a small frame.” He also let me know that they were “severely limited in what we can do because of your past paradoxical reaction to Versed.” He used Demerol instead which immediately suppressed the PVCs for the rest of the study. There may have been a few, but the Demerol definitely toned them down. Even after he decided not to do the ablation, he put one catheter in my right femoral vein and did the pacing and some other things.
QUESTIONS:
--I am the same size now as I was in December. As I related above, at that time my EP thought he could find at least a few spots to ablate and he thought they would be in the left ventricle. On Monday, he would not do the ablation because of the dangers inherent in left ventricle ablations in someone with a “small frame.” He is inconsistent and inconsistent about important things. It honestly seems like a situation where my case is too complex for him and their facility, but he does not want to admit it. My friends, many of who are in the medical field are encouraging me to seek a second opinion if not switch doctors completely. Based on the evidence, would you recommend this as well? I am only about two hours from the Cleveland Clinic and I know that they do pediatric ablations, so they would have a smaller balloon if that is needed.
--I had a paradoxical reaction to Versed 11 years ago. On Monday, they used 75mg of Demerol and that immediately stopped the PVCs. Is it possible for a person to have a paradoxical reaction to a drug and then have them react normally to it years later? My EP made a huge deal of how important it was to use Versed.
--My EP is now suddenly blaming all of my symptoms on the mitral valve prolapse. He said the MVP was “mild.” I may be missing something, but that does not make sense. Am I missing something?
--My EP scheduled me for a TTT on Tuesday. Is there a doctor present for the test? I know they sometimes use Isuprel to increase the heart rate, and that would induce a long run of PVCs in me and possible fainting if I am tilted up on the table. I realize that the purpose of the test is to induce syncope, but because the arrhythmia is so frequent with me and I do have attendant symptoms it might be good if a medical professional were in the room just in case!
Thank you
Jenn
What dosage of Magnesium Malate do you take for your PACs? Also have you found anything els that helps keep them at bay?
You can get all the abalations you want but if your muscle cells are not working properly you are just treating the symptoms and you will get worse. The key to proper cell function is homestasis of ions...especially magnesium so you should consider magnesium therapy. Magnesium Malate is actually the best form of Magnesium to take for PAC or PVC because not only is it a chelated form which has a high bio-availablility but the malate form works with a part of the Krebs cycle that targets muscle cells including your heart muscle cells. Studies have shown the people who die from PVC induced MI had a very low functioning or non exsistant Magnesium Malate Kreb cycle function. I am in a Respritory Therapy program and we have to know ion function as a matter of routine to keep patients alive. Magnesium is a ion that is critical in the balance of homestasis as it relates to cell function. It is simple in the fact that if your magnesium is low your cells lose their ability to perform their normal function and in the case of heart muscle pace maker cells they will lose the ability to fire properly at regular intervals causing PAC & PVCs. Also normal blood serum levels of magnesium does not indicate that magnesium in your cells is normal or not deficient. Thus the chelated forms should be taken as most know by now. I had arrythmias that were getting so bad that it was getting hard to breathe on occasion. I started taken Magnesium Glycinate and my PACs went down by half. Then I read the studies on the Krebs-Malate cycle combined with my own knowledge from my University work. I do not have ANY arrythmia as long as I take the Malate form of Magnesium. I take Magnesium Malate from Source Naturals. To do a internet search type in magnesium and PVC or PAC or arrythmia.
It is Dr. Grubb at UTMC. They keep going back and forth on whether my issues are cardiac or ANS in origin. Dr. Grubb's NP said she didn't see any evidence of ANS dysfunction based on my TTT values, but my old EP in the same practice said that what happened during the test in terms of heart rhythm clearly point to an ANS problem. Bev, the NP, did say that they are going to keep my case regardless of what Dr. Grubb decides is causing my symptoms and odd test results because they don't want to keep passing me back and forth between the EP Clinic and the Syncope Clinic even though they are on the same hallway at UTMC. I am very grateful for that! I have heard that Dr. Grubb spends hours with each patient if he needs to in order to figure out what is going on. My appointment is at 4:00 in the afternoon, and I know he will be running late because he cares enough to spend so much time with each patient. I just hope that my case gets the same exacting review as others considering what time it will be when I actually get in there! I do plan to type up a detailed medical history, so that should help a lot. My old EP was so hurried all the time that there are gross inaccuracies in my record.
I will let you know what I find out!
I will let you know what I find out!
that's great that you're getting somewhere maybe seeing the ANS dr will help; which dr is that? I want to see if he's on the list I have and on my insurance. I know there are a few great ANS specialists like Dr. Grubb and the ones listed in the NDRF site and I would love to know how your visit goes and what they find out.
I hope the you are all doing well.
To make a long story short, my electrophysiologist referred me to a world renowned expert on ANS dysfunction who also happens to be on the faculty at the University of Toledo. My EP freaked out after what happened during the TTT. He basically, kind of, sort of, in a really roundabout sort of way admitted that they likely missed something during the EPS, but then he referred me to his colleague. He said he knows that I have very frequent PVCs and that I am highly symptomatic with them, but he thinks there may be something else going on to explain the syncope and near syncope events. I saw the expert's NP in late April. After our appointment, she talked with the doctor about my case and he agreed to take me! I see him early next week.
My old EP mentioned that the new EP will probably implant an internal recording monitor (internal loop recording monitor) because it is more sensitive than the traditional ones. I did two 24-hour Holter monitors (they do not do 48-hour ones at UTMC). I am hoping they will get what they need from those so I can avoid another costly invasive procedure.
To make a long story short, my electrophysiologist referred me to a world renowned expert on ANS dysfunction who also happens to be on the faculty at the University of Toledo. My EP freaked out after what happened during the TTT. He basically, kind of, sort of, in a really roundabout sort of way admitted that they likely missed something during the EPS, but then he referred me to his colleague. He said he knows that I have very frequent PVCs and that I am highly symptomatic with them, but he thinks there may be something else going on to explain the syncope and near syncope events. I saw the expert's NP in late April. After our appointment, she talked with the doctor about my case and he agreed to take me! I see him early next week.
My old EP mentioned that the new EP will probably implant an internal recording monitor (internal loop recording monitor) because it is more sensitive than the traditional ones. I did two 24-hour Holter monitors (they do not do 48-hour ones at UTMC). I am hoping they will get what they need from those so I can avoid another costly invasive procedure.
Jenn very Interesting; this is why I've questioned my DX of neurocardiogenic syncope and orthostatic intolerance - same thing as they told you - my bp/hr stayed level until they hit me with nitroglycerin then bam lights out and my heart stopped which is not normal.
I'm also like you when my HR speeds up from adrenaline or exercise or I get into bigeminy & trigeminy episodes I faint. My new cardiologist said he doesn't quite understand it all and is sending me to Vanderbilt for a complete autonomic workup instead of just relying on a TTT.
I can't wait to see what answers you get and how much you find out =)
Rilesnic - here's a link http://www.ndrf.org/ not sure if I've given you that before? http://www.ndrf.org/NDRFHandbook.htm http://www.ndrf.org/NDRFHandbook.htm
The ANS includes the parasympathetic; sympathetic and enteric nervous systems (the GI tract). About halfway down in the handbook is a great illustration of the ANS and what each part does =) they regulate our "inner worlds". If you're near a Cleveland Clinic, Mayo or Vanderbilt it may be worth a trip for them to give you a full autonomic work up.
I'm also like you when my HR speeds up from adrenaline or exercise or I get into bigeminy & trigeminy episodes I faint. My new cardiologist said he doesn't quite understand it all and is sending me to Vanderbilt for a complete autonomic workup instead of just relying on a TTT.
I can't wait to see what answers you get and how much you find out =)
Rilesnic - here's a link http://www.ndrf.org/ not sure if I've given you that before? http://www.ndrf.org/NDRFHandbook.htm http://www.ndrf.org/NDRFHandbook.htm
The ANS includes the parasympathetic; sympathetic and enteric nervous systems (the GI tract). About halfway down in the handbook is a great illustration of the ANS and what each part does =) they regulate our "inner worlds". If you're near a Cleveland Clinic, Mayo or Vanderbilt it may be worth a trip for them to give you a full autonomic work up.
Good for you for getting that junk monitored! After 17 years, my PCP tells me yesterday, he thinks I'm having a vagal response. He said para or sympathetic, I was too excited to remember what he was saying. So I asked, I'm not crazy? and he replied, Sorry, I hate to tell you that you are not crazy. He also told me although I am very high strung, he believes I have more adrenaline than I do anxiety....I left with my held high....I'm not a nut like I feel most of the time, and it looks like ANS issues and now we may be headed in the right direction. It's amazing how a diagnosis, good or bad, relieves the mind of stress. In my case even a mention of a possible diagnosis.
They were looking for ANS issues with the TTT. He thought that it was something to do with my heart rate and blood pressure as opposed to the arrthymia causing the symptoms. But my heart rate and blood pressure responded appropriately throughout the entire test. I only became symptomatic when it went into the bigeminy and couplets. The nurse said that it is common for people with ventricular bigeminy to have a lot of lightheadedness and sometimes full syncope. There is so much arrthymia that the organs don't get enough oxygen. You are right, at least they are coming closer to having some answers.
sounds like alot of ANS issues going on, did they mention about autonomic nervous system dysfunction?
at least you're getting some answers now =)
at least you're getting some answers now =)
I am confused (surprise surprise). I have bigeminy at times too--but I dont pass out from it or get dizzy and I am inactive and in horrible shape? Dont some people just have it and be ok with it? I am in it at times daily for a min. or two here and there.
I had the TTT this morning. Interestingly, the TTT was a lot more revealing and replicated my symptoms much more accurately than some of the other tests. As the R.N. administering it said, "you passed it and you failed it too." I passed it in that it showed that unexplained, rapid changes in blood pressure or actual heart rate are not present. I failed it in that, and I'm quoting from the report, "symptoms during challenge (introduction of Isuprel at 1 MCG per minute ): Multifocal, bigeminal and paired PVCs, palpitations, lightheaded, and weak." I almost passed out when it had been in bigeminy for about two
minutes and the nurse turned off the Isuprel. He held me up and said that we were continuing because he wanted to see what it did when the Isuprel was off. It stayed in bigeminy for another few minutes. I felt EXACTLY how I felt in real life when I do anything other than just sit around. The nurse said that he was going to talk to my electrophysiologist this afternoon. He asked me when my next appointment was and I told that it is in early April. He told me not to be surprised if someone calls to bump it up. Apparently, they are concerned because it used to be primarily in a trigeminal pattern with occasional bigeminy and couplets. Today, the nurse was able to induce bigeminy without too much trouble. I explained to the nurse that it rarely goes into the arrhythmia and I don't have the attendant symptoms when I am not doing anything. I do have PVCs at rest, but I don't feel them are there are no symptoms. The EPS and the TTT both prove that. During the EPS, he had a hard time inducing the arrhythmia because I was lying flat and not moving, and then the Demerol slowed everything down and there was very little, if any arrhythmia for the rest of the study. I need to somehow figure out if I still have a paradoxical reaction to Versed. Today, there was no arrhythmia to speak of at baseline when I was lying down. There was also nothing significant when they first tilted the table up because I was not moving. I do have times when just standing up is enough to knock it into its funky beats, but not today.
Anyway, when they started the Isuprel infusions to attempt to mimic what happens when I walk around and do my day to day activities, the arrhythmia started. The nurse printed out the ECG strip and is going to show it to my EP and talk to him about what happened during the TTT. He and I agree that it is nothing to do with my blood pressure and heart rate, and he doesn't think that my EP will have any trouble believing it now after he reviews the ECG. It's good that someone in the medical field saw it as it was happening and I was hooked up to monitors at the time. They have seen more than enough of usual PVCs, but no one was sure what was different the times when they make me lighheaded or completely faint. The thought now is that it is bigeminy runs.
I guess sometimes you have a test for one thing and it proves revealing in other ways.
The nurse who administered the test knows that I am an attorney and a professor and he acknowledged how inappropriate, among other things, it is when I stumble in front of my class toward the end of lecture. You can only blame it on tripping over your own feet so many times...
Take care,
Jenn
minutes and the nurse turned off the Isuprel. He held me up and said that we were continuing because he wanted to see what it did when the Isuprel was off. It stayed in bigeminy for another few minutes. I felt EXACTLY how I felt in real life when I do anything other than just sit around. The nurse said that he was going to talk to my electrophysiologist this afternoon. He asked me when my next appointment was and I told that it is in early April. He told me not to be surprised if someone calls to bump it up. Apparently, they are concerned because it used to be primarily in a trigeminal pattern with occasional bigeminy and couplets. Today, the nurse was able to induce bigeminy without too much trouble. I explained to the nurse that it rarely goes into the arrhythmia and I don't have the attendant symptoms when I am not doing anything. I do have PVCs at rest, but I don't feel them are there are no symptoms. The EPS and the TTT both prove that. During the EPS, he had a hard time inducing the arrhythmia because I was lying flat and not moving, and then the Demerol slowed everything down and there was very little, if any arrhythmia for the rest of the study. I need to somehow figure out if I still have a paradoxical reaction to Versed. Today, there was no arrhythmia to speak of at baseline when I was lying down. There was also nothing significant when they first tilted the table up because I was not moving. I do have times when just standing up is enough to knock it into its funky beats, but not today.
Anyway, when they started the Isuprel infusions to attempt to mimic what happens when I walk around and do my day to day activities, the arrhythmia started. The nurse printed out the ECG strip and is going to show it to my EP and talk to him about what happened during the TTT. He and I agree that it is nothing to do with my blood pressure and heart rate, and he doesn't think that my EP will have any trouble believing it now after he reviews the ECG. It's good that someone in the medical field saw it as it was happening and I was hooked up to monitors at the time. They have seen more than enough of usual PVCs, but no one was sure what was different the times when they make me lighheaded or completely faint. The thought now is that it is bigeminy runs.
I guess sometimes you have a test for one thing and it proves revealing in other ways.
The nurse who administered the test knows that I am an attorney and a professor and he acknowledged how inappropriate, among other things, it is when I stumble in front of my class toward the end of lecture. You can only blame it on tripping over your own feet so many times...
Take care,
Jenn
Your situation sounds very similar to mine. I have been diagnosed with everything you have except for the bradycardia and not sure where the PVC's are originating from. I have not had surgery for my scoliosis either, but I always wonder since my spine is out of line, could it be effecting the vagus nerve that causes all these other problems. I too am very small and the doctors tell me that everything I feel is because of my size...5'2" and 100 pounds. I am 38 and have had these symptoms since I was 21. I am currently awaiting an appointment with an EP in Houston whom a close family member has recommended. I started taking Toprol about 7 years ago and could not take it either, so I have been on atenolol 12.5 ever since. They recently tried to increase the dosage but I could not tolerate it due to my asthma. My trace regurgitation has never been mentioned before my last cardio appt. as a problem, but when I was there he said had we be living in the 1980's, he would diagnose MVP and I would be going along my merry way...whatever that means. If I lived so close to the Cleveland Clinic, I think I would have to seek a second opinion from them. I would think the TTT is important because of your lightheadedness. That is increasing so much for me, it's getting intolerable. I hope you get some answers and please keep us posted. I am curious as to what answers you get being our situations seem to be so similar. Best to you! (FYI- when I had my gallbladder removed in July 2008, they had to use half the amt. of air to do the laproscopic surgery..my husband and I actually questioned the surgeon before regarding my size, and he told us he had removed gallbladders from children as well. That made us both much more comfortable. My HR did increase a lot after surgery and they did think I had a reaction to the general anesthesia. It was no fun to see the crash cart right outside my room).
sorry for the grammar and typo's it's difficult to read and make sense in the mornings for me =)
just a couple of things before my brain wakes up...I'll read it again later but you're like me with many issues involved.
For the TTT a doctor is in the room with you at all times and monitors your system and notes things then asks questions at certain points. I'm not sure what Isuprel is but I had Nitroglycerin given at the 20 min mark because I had not fainted yet...BIG mistake - made me faint and I had no palpable pulse bp tanked; which I was told is extremely rare to happen. When this happens the hit a button and it makes you go back down flat in a millisecond then they prop your legs up and try to get blood back to your brain/heart.
Did they explain why you need a TTT?
I haven't heard they give anything to increase HR during a TTT; just the opposite because they want to see what your body does naturally but you could always ask in the Dysautonomia forum - almost everyone there has had a TTT or going to have one. Halbashes (the CL there)is extremely knowledgeable about most things ANS, so you could ask her if this is common. http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266
While 10,000 pvc's may seem like alot, it's still only 10% of the normal 100,000 daily heart beat and many EP's will not ablate or even do an EPS until patients are at the 15-20% threshold. Bigeminy & Trig are no fun for sure and add NSVT runs and symptoms into the mix makes us miserable, but you can tolerate it.
I lived with roughly 50,000 for a couple of years until I developed cardiomyopathy and my diastolic pressures were really increased. Even after ablation, because I had VT and NSVT runs (which are very difficult to ablate) I was not cured - my pvc's came back full force within a few months AND I added atria problems with PAC's and PSVT runs! Now, I have about 10,200 daily, and arrhythmia's in both parts of my heart...double whammy...and I was dx with a malignant arrhythmia called Polymorphic VT.
Many people live years with MVP and symptoms until it gets to the severe stage where most dr's will fix them. I found out all my valves have some mild regurgitation but they didn't even seemed concerned just said to watch them with an echo.
I would get a 2nd or even 3rd opinion if you need, it's always best to see what another doctor says. Btw...Cleveland Clinic is a great place and many of us heart patients with Autonomic nervous system issues are seen there.
For the TTT a doctor is in the room with you at all times and monitors your system and notes things then asks questions at certain points. I'm not sure what Isuprel is but I had Nitroglycerin given at the 20 min mark because I had not fainted yet...BIG mistake - made me faint and I had no palpable pulse bp tanked; which I was told is extremely rare to happen. When this happens the hit a button and it makes you go back down flat in a millisecond then they prop your legs up and try to get blood back to your brain/heart.
Did they explain why you need a TTT?
I haven't heard they give anything to increase HR during a TTT; just the opposite because they want to see what your body does naturally but you could always ask in the Dysautonomia forum - almost everyone there has had a TTT or going to have one. Halbashes (the CL there)is extremely knowledgeable about most things ANS, so you could ask her if this is common. http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266
While 10,000 pvc's may seem like alot, it's still only 10% of the normal 100,000 daily heart beat and many EP's will not ablate or even do an EPS until patients are at the 15-20% threshold. Bigeminy & Trig are no fun for sure and add NSVT runs and symptoms into the mix makes us miserable, but you can tolerate it.
I lived with roughly 50,000 for a couple of years until I developed cardiomyopathy and my diastolic pressures were really increased. Even after ablation, because I had VT and NSVT runs (which are very difficult to ablate) I was not cured - my pvc's came back full force within a few months AND I added atria problems with PAC's and PSVT runs! Now, I have about 10,200 daily, and arrhythmia's in both parts of my heart...double whammy...and I was dx with a malignant arrhythmia called Polymorphic VT.
Many people live years with MVP and symptoms until it gets to the severe stage where most dr's will fix them. I found out all my valves have some mild regurgitation but they didn't even seemed concerned just said to watch them with an echo.
I would get a 2nd or even 3rd opinion if you need, it's always best to see what another doctor says. Btw...Cleveland Clinic is a great place and many of us heart patients with Autonomic nervous system issues are seen there.
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