Aa
Sudden syncope, NSVT, EP study and ablation
I am a 22 year-old female in good health. PMH of Hemicrania Continua dx fall 2006, which is treated with an implanted occipital nerve stimulator and Inappropriate Sinus Tachycardia dx fall 2009 which is treated and controlled with 10 mg Bisoprolol.
In spring 2010 I began to experience sudden syncope (I would have no warning before I would faint, and recovery was usually after 20-30 secs and no excessive tiredness after).chest x-ray normal, EKG normal Echo from 2008 normal, 30 day event monitor,I did not faint during this period and the only thing that was found was some PVCs and one triplet.
From Spring until Oct. 2010 I would faint anywhere from 0-2 times a month, always sudden w/o warning In Oct. I suddenly began to faint 2-3 times a week. I was in Spain at this time. I saw a EP there and had a holter done, I fainted while wearing the holter and the time of my sudden syncope correlated with a run of non-sustained ventricular tachycardia. At this point the EP had me try Verapamil, but that cause me to develop a very symptomatic 2nd degree heart block, so it was stopped.
They also did 2 echos that showed mild mitral valve regurgitation and a slightly below normal right ventricle ejection fraction, I was told this was normal/expected given my arrhythmia. They then did an EP study where they were unable to induce my arrhythmia, so they couldn’t ablate it. At this point I stopped treatment in Spain because I was returning to the US soon,note that I have not fainted at all since Nov. 25th.
In spring 2010 I began to experience sudden syncope (I would have no warning before I would faint, and recovery was usually after 20-30 secs and no excessive tiredness after).chest x-ray normal, EKG normal Echo from 2008 normal, 30 day event monitor,I did not faint during this period and the only thing that was found was some PVCs and one triplet.
From Spring until Oct. 2010 I would faint anywhere from 0-2 times a month, always sudden w/o warning In Oct. I suddenly began to faint 2-3 times a week. I was in Spain at this time. I saw a EP there and had a holter done, I fainted while wearing the holter and the time of my sudden syncope correlated with a run of non-sustained ventricular tachycardia. At this point the EP had me try Verapamil, but that cause me to develop a very symptomatic 2nd degree heart block, so it was stopped.
They also did 2 echos that showed mild mitral valve regurgitation and a slightly below normal right ventricle ejection fraction, I was told this was normal/expected given my arrhythmia. They then did an EP study where they were unable to induce my arrhythmia, so they couldn’t ablate it. At this point I stopped treatment in Spain because I was returning to the US soon,note that I have not fainted at all since Nov. 25th.
Update:
Since posting this I had the stress test done, and got very sick after it, because I was off my bisoprolol before the stress test my inappropriate sinus tach took over nd my heart rate would not slow down. They had to put me on oxygen, and all of my muscles got very tight and contracted, I could barely move my fingers out straight, much less relax them. I also ended up nauseated and vomiting. They kept me there on oxygen waiting to see if my heart rate would go down, but it didn't so they eventually took me over to see my dr and he did an EKG and my heart rate was 192 still! So he sent me over to the ER so they could slow my heart rate down and I could be admitted, he decided to move up my EP study and was going to do it the next day.
(also while in the ER my potssium was very low 2.3, and my magnesium was also low, but only a little bit)
During the EP study he couldn't induce my tachycrdia and he put in the loop recorder.
At my follow up they had to chage the settings on the recorder so it wouldn't record normal stuff or misread and record.
Then about 10 after the loop recorder was implanted my breakfast disagreed with my and I vomited, so I wasn't able to take my bisoprolol again and when I was just out for a walk the same thing happened like after the stress test! I ended back in the ER with low potassium and all the same symptoms as before, they wanted to admit me but I proved that I was able to swallow the potassium pills so they let me go home, my discharge papers however said that I had supraventricular tachycardia.... now that's a new one! Maybe that was only because of the low potassium, although my potassium wasn't as low this time as the time before.
Anyways, I recovered fast once my heart rate was under control and I went in the next week to have my loop recorder read, so this was 2 weeks post implant. The recorder had 73 recordings on it.... which apparently is the most it can hold and I was still missing 4 days of recordings that it had recorded over because it was full! And it was like a week since the last time I had it read! Although obviously my ER adventure had to cause a lot of recordings. I wasn't able to see my EP after this so I saw another one in the same clinic, he wasn't able to tell me from the loop recorder if I had supraventricular tachycardia!! How is the loop recorder any help then??
Another thing as well is that at the rate I'm going it looks like I will be lucky if my recorder lasts past 2 months! The battery level at two weeks post implant was already 75%.... I keep setting it off, but the stuff that it is showing isn't the stuff that we are looking for!
This is all very frustrating. Do you have any suggestons for me? Would an epicardial EP study be an option?
I have finally recieved the recording the NSVT during my faint from Spain... and it is a 12 lead recording.... is reattempting the EP study or doing an ablation w/o inducing the arrhythmia an option? (I realize this one is probably a bit harder to answer not being able to see the recording, but generally speaking).
Since posting this I had the stress test done, and got very sick after it, because I was off my bisoprolol before the stress test my inappropriate sinus tach took over nd my heart rate would not slow down. They had to put me on oxygen, and all of my muscles got very tight and contracted, I could barely move my fingers out straight, much less relax them. I also ended up nauseated and vomiting. They kept me there on oxygen waiting to see if my heart rate would go down, but it didn't so they eventually took me over to see my dr and he did an EKG and my heart rate was 192 still! So he sent me over to the ER so they could slow my heart rate down and I could be admitted, he decided to move up my EP study and was going to do it the next day.
(also while in the ER my potssium was very low 2.3, and my magnesium was also low, but only a little bit)
During the EP study he couldn't induce my tachycrdia and he put in the loop recorder.
At my follow up they had to chage the settings on the recorder so it wouldn't record normal stuff or misread and record.
Then about 10 after the loop recorder was implanted my breakfast disagreed with my and I vomited, so I wasn't able to take my bisoprolol again and when I was just out for a walk the same thing happened like after the stress test! I ended back in the ER with low potassium and all the same symptoms as before, they wanted to admit me but I proved that I was able to swallow the potassium pills so they let me go home, my discharge papers however said that I had supraventricular tachycardia.... now that's a new one! Maybe that was only because of the low potassium, although my potassium wasn't as low this time as the time before.
Anyways, I recovered fast once my heart rate was under control and I went in the next week to have my loop recorder read, so this was 2 weeks post implant. The recorder had 73 recordings on it.... which apparently is the most it can hold and I was still missing 4 days of recordings that it had recorded over because it was full! And it was like a week since the last time I had it read! Although obviously my ER adventure had to cause a lot of recordings. I wasn't able to see my EP after this so I saw another one in the same clinic, he wasn't able to tell me from the loop recorder if I had supraventricular tachycardia!! How is the loop recorder any help then??
Another thing as well is that at the rate I'm going it looks like I will be lucky if my recorder lasts past 2 months! The battery level at two weeks post implant was already 75%.... I keep setting it off, but the stuff that it is showing isn't the stuff that we are looking for!
This is all very frustrating. Do you have any suggestons for me? Would an epicardial EP study be an option?
I have finally recieved the recording the NSVT during my faint from Spain... and it is a 12 lead recording.... is reattempting the EP study or doing an ablation w/o inducing the arrhythmia an option? (I realize this one is probably a bit harder to answer not being able to see the recording, but generally speaking).
I don't know, sometimes it does take a few days to respond, especially if they have to research something in your question you ask about.
Why aren't the doctors responding??
sounds like your syncope and arrhythmia's are connected like mine; that link with ccc group has some great information about VT and syncope - which is a good reason to get a TTT asap to see what your heart does - I was quite shocked my heart stops when I faint; I've been told syncope and arrhythmia's were no big deal until August 2009.
hopefully the MH dr here reads your thread and gives you some help soon =)
hopefully the MH dr here reads your thread and gives you some help soon =)
They said my fainting is caused by the NSVT.
a tilt table test can dx many things not just pre-syncope and blood pressure issues; did they say what caused your fainting?
sometimes when I faint I have no symptoms or warning it's just bam lights out and I'm gone, my TTT showed that when that happens my heart stops, yet other times I get pre-syncope feelings and then after I have days of feeling ill.
My fainting and ANS issues are related to my tachycardia (polymorphic which was dx as malignant arrhythmia's) and NSVT runs and my dr's have suggested it is ARVD, but my Cardiac MRI was inconclusive and they said I needed further testing.
here's a link with some info that one of dr's gave me - http://www.cccgroup.info/neurosyn.asp
with your family history of SCD and your symptoms I'm surprised they didn't implant an ICD even without provoking anything during your EPS
I don't think any of us with ICD's want them implanted, but I made the choice as a precaution for sudden cardiac arrest again. I had a pacemaker/icd combo so they could regulate my heart rate so I stopped fainting with my heart rate at 60 which helped greatly =) and mine helps with the high hr's when my NSVT runs start.
sometimes when I faint I have no symptoms or warning it's just bam lights out and I'm gone, my TTT showed that when that happens my heart stops, yet other times I get pre-syncope feelings and then after I have days of feeling ill.
My fainting and ANS issues are related to my tachycardia (polymorphic which was dx as malignant arrhythmia's) and NSVT runs and my dr's have suggested it is ARVD, but my Cardiac MRI was inconclusive and they said I needed further testing.
here's a link with some info that one of dr's gave me - http://www.cccgroup.info/neurosyn.asp
with your family history of SCD and your symptoms I'm surprised they didn't implant an ICD even without provoking anything during your EPS
I don't think any of us with ICD's want them implanted, but I made the choice as a precaution for sudden cardiac arrest again. I had a pacemaker/icd combo so they could regulate my heart rate so I stopped fainting with my heart rate at 60 which helped greatly =) and mine helps with the high hr's when my NSVT runs start.
Hi Lisa,
They haven't done a tilt table because my BP when laying down vs. standing up is perfectly normal, there are never any changes and because I don't have any pre-syncope. The one other thing that they have considered is serizure activity, but brain MRI was normal in spring 2006 and fall 2008 (done for the headache disorder hemicrania continua) and because of the reports from people who witness me go down, they believed it more likely to be cardiac, and now in Spain they correlated my fainting with the NSVT, proving a cardiac cause.
Through my own research I have found ARVD, and I did wonder if it may be that... although no cardiologist has ever mentioned it to me before. I have 3 cardiologists/EPs that have extensivly worked on my case; one from the US before I went to Spain, the one in Spain and the one I am seeing now (after returning to the US I moved and had to see a new doctor, although that may be for the best because apparently I am now at a really good center for these kinds of problems). When referring me to the new cardio/EP my old cardio from the US did mention the ICD, he said that NSVT doesn't normally need to be treated but because mine was so symptomatic that it would need to be treated, and said the best way to do that would be with an ICD, but that he was reluctant to recommend that because of my other implant and the increased risk of infection I would have... but ha... the ICD leaves me in the same position as with the ILR, I really do not want something else inside of me!
They haven't done a tilt table because my BP when laying down vs. standing up is perfectly normal, there are never any changes and because I don't have any pre-syncope. The one other thing that they have considered is serizure activity, but brain MRI was normal in spring 2006 and fall 2008 (done for the headache disorder hemicrania continua) and because of the reports from people who witness me go down, they believed it more likely to be cardiac, and now in Spain they correlated my fainting with the NSVT, proving a cardiac cause.
Through my own research I have found ARVD, and I did wonder if it may be that... although no cardiologist has ever mentioned it to me before. I have 3 cardiologists/EPs that have extensivly worked on my case; one from the US before I went to Spain, the one in Spain and the one I am seeing now (after returning to the US I moved and had to see a new doctor, although that may be for the best because apparently I am now at a really good center for these kinds of problems). When referring me to the new cardio/EP my old cardio from the US did mention the ICD, he said that NSVT doesn't normally need to be treated but because mine was so symptomatic that it would need to be treated, and said the best way to do that would be with an ICD, but that he was reluctant to recommend that because of my other implant and the increased risk of infection I would have... but ha... the ICD leaves me in the same position as with the ILR, I really do not want something else inside of me!
I'm not a dr just a patient who's been through some of what you'e gone through.
A few things to discuss with your dr - tilt table test needed asap; ARVD (Arrhythmogenic right ventricular dysplasia) or other infiltrative diseases; the need for an pacemaker/ICD (defibrillator) vs the ILR.
good luck, hopefully you'll find some answers soon =)
A few things to discuss with your dr - tilt table test needed asap; ARVD (Arrhythmogenic right ventricular dysplasia) or other infiltrative diseases; the need for an pacemaker/ICD (defibrillator) vs the ILR.
good luck, hopefully you'll find some answers soon =)
oops, sorry I hit submit before I finished with my history and question... here is the rest:
Now back in the US I have a EP that I am seeing here, I unfortunately do not have all of my medical records from Spain and I’m missing the EP study reports as well as the holter tracing of the NSVT (I have been trying for almost 2 months to get these records, I highly doubt I will be able to obtain them). My EP here has decided that I should have a stress test done to try and provoke my arrhythmia as well as an EP study and possible ablation, he plans to insert a loop recorder if he is unable to ablate.
I really do not want the internal loop recorder, I already have one implant I really don’t want another. However, at the same time I realize that an external monitor is not a good option either. I was told there is a 50-60% chance he can induce my arrhythmia and if induced an 80% chance it can be ablated. Those really do not seem like good odds to me.
I have a family history (paternal grandfather) of sudden cardiac death <35 years old. My paternal grandmother also had numerous heart issues before she died at the age of 70 (a rhythm issue needed electrocardioversion and a pacemaker and eventually heart failure). My maternal grandfather had a heart attack at age 59.
Here are some of my questions I’d greatly appreciate it if you could answer them and/or give me any tips on how to talk more about this and my options with my EP, I have an appointment to discuss this all on Monday.
1. How much information is needed to be able to ablate? For example, if my arrhythmia is unable to be induced can they ablate based off of another tracing like my triplet or a PVC?
2. Could my arrhythmia be on the outside of my heart vs. the inside and that is why they couldn’t induce it in Spain? Should I have an epicardial EP study done as well as the traditional endocardial EP study?
3. Is a loop recorder really my only choice, I really hate these sudden faints ideally I’d like this one procedure to take care of them, so I never have to faint again. I really don’t like the loop recorder option because 1, it’s another thing inside of me and 2, once it’s in I’m just waiting around until I faint again, that’s a bit unsettling.
4. Any other suggestions on what can be done or should be done or that I should discuss with my EP? (Also, I am at a very qualified EP center and my doctor deals specifically with ventricular tachycardias and difficult cases. Although my doctor in Spain was also very qualified, he specifically studied and was an expert in syncope and cardiac arrhythmias).
5. Should I be concerned about my family history given my current arrhythmia?
6. The last few weeks I have developed cyanosis of the hands, lips and skin around my eyes upon exertion occasionally… I was tested for various blood disorders and auto-immune disease but all came back normal, could this be related to my heart, if so in what way?
Thank you so much for any help, advice or discussion points you can give me for when I wee my EP next!!
Now back in the US I have a EP that I am seeing here, I unfortunately do not have all of my medical records from Spain and I’m missing the EP study reports as well as the holter tracing of the NSVT (I have been trying for almost 2 months to get these records, I highly doubt I will be able to obtain them). My EP here has decided that I should have a stress test done to try and provoke my arrhythmia as well as an EP study and possible ablation, he plans to insert a loop recorder if he is unable to ablate.
I really do not want the internal loop recorder, I already have one implant I really don’t want another. However, at the same time I realize that an external monitor is not a good option either. I was told there is a 50-60% chance he can induce my arrhythmia and if induced an 80% chance it can be ablated. Those really do not seem like good odds to me.
I have a family history (paternal grandfather) of sudden cardiac death <35 years old. My paternal grandmother also had numerous heart issues before she died at the age of 70 (a rhythm issue needed electrocardioversion and a pacemaker and eventually heart failure). My maternal grandfather had a heart attack at age 59.
Here are some of my questions I’d greatly appreciate it if you could answer them and/or give me any tips on how to talk more about this and my options with my EP, I have an appointment to discuss this all on Monday.
1. How much information is needed to be able to ablate? For example, if my arrhythmia is unable to be induced can they ablate based off of another tracing like my triplet or a PVC?
2. Could my arrhythmia be on the outside of my heart vs. the inside and that is why they couldn’t induce it in Spain? Should I have an epicardial EP study done as well as the traditional endocardial EP study?
3. Is a loop recorder really my only choice, I really hate these sudden faints ideally I’d like this one procedure to take care of them, so I never have to faint again. I really don’t like the loop recorder option because 1, it’s another thing inside of me and 2, once it’s in I’m just waiting around until I faint again, that’s a bit unsettling.
4. Any other suggestions on what can be done or should be done or that I should discuss with my EP? (Also, I am at a very qualified EP center and my doctor deals specifically with ventricular tachycardias and difficult cases. Although my doctor in Spain was also very qualified, he specifically studied and was an expert in syncope and cardiac arrhythmias).
5. Should I be concerned about my family history given my current arrhythmia?
6. The last few weeks I have developed cyanosis of the hands, lips and skin around my eyes upon exertion occasionally… I was tested for various blood disorders and auto-immune disease but all came back normal, could this be related to my heart, if so in what way?
Thank you so much for any help, advice or discussion points you can give me for when I wee my EP next!!
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