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Capturing the Rhythm
I have suffered from various undiagnosed and some diagnosed arrhythmias since I was 14 years old. When I first began experiencing palpitations I was given a Holter monitor which picked up the garden variety single ectopics, both PAC and PVC, but none of the lengthy, terrifying episodes that I was most concerned about. An echo showed normal heart structure and I was given 40mg/day of Nadolol and sent on my way with a diagnosis of anxiety. As a child, before this all happened, I had never even considered my heartbeat. Every time I'd complain, they'd say, "So, you were anxious about something and then your heart started to race?" This was never the case. I would generally be doing absolutely nothing - watching TV, playing on the computer - when I'd be struck with this horrible turbulence in my chest. My heart would buck and jiggle and get all out of rhythm. It was never a racing heart that I experienced. But, yes, after it did race because I became anxious about it. So anyways, fast forward 22 years later...
Over the past year my heart has acted very irritable, primarily around ovulation and menstruation. I dealt with it for a year, but since April 1st, I've been getting long runs of three different types (they all feel very distinct) and I returned to my GP on June 25th to be evaluated. She ran blood tests: CBC, electrolytes, thyroid and hormones. The only tests that came back out of range was my progesterone at 7 points above max for follicular phase. This didn't seem all that out of the ordinary. She determined hormones were not causing my excitable heart. My TSH came in at .6, .3 being bottom of normal. Hyperthyroidism runs in my family and my TSH has been steadily decreasing for over a year now. I am also getting night sweats and waking with a pounding heart early in the mornings. But, this could be practically anything, I understand this.
The holter came back with just 2 PAC's - which was a huge disappointment because that particular day, my heart was acting angelic. It NEVER does that! (Maybe they should prescribe Holters as therapy? LOL) A week later and I was in palpitation horrors. A week after that and I had the worst episode of my life, my heart beating erratically for well over 20 seconds during which time I couldn't feel a carotid pulse and I nearly passed out.
My GP referred me to a cardiologist, who although is very handsome (lol), was ready to deem me completely healthy based solely upon my 6/25 ECG. He told me that I wasn't going to die, I wasn't experiencing life threatening arrhythmias and that there was nothing to worry about. He wasn't concerned about me nearly blacking out, saying only that actually passing out was of more concern. When I pressed him for how he knew this without a) catching one of the 3 long, bad rhythms on a monitor or b) evaluating my heart further, he told me that he could tell by my ECG. I asked him what the likelihood of my heart being structurally abnormal with a clean ECG would be and he said 1:1000.
I wasn't exactly thrilled with this because I felt that it was a brush off and minimization of my symptoms, which to me, seem very severe - and terrifying. He did however set me up with a 30-day event monitor and before I left he came out into the hall and told me he wanted to do a quick echo to reassure me. This made me feel as though he was actually aware of my concerns. The tech echo'd me for about 20 minutes before he came in and asked her for a few different views. He said, "Looks great," and told me that he did want a complete echo study and to come back in a week. So, I'm scheduled for a complete echo on Tuesday.
I'm long-winded so you'll have to excuse me. Now I'm at the point where I'm beginning to worry about this event monitor not catching any of my three bad rhythms. Providing my echo comes back clean, would any of you push for an extension on the monitor? I realize that a structurally normal heart is generally an indicator of health and a low chance of sinister arrhythmias, but I only have one heart and do want to know exactly what I'm dealing with. I'm having a really hard time wrapping my mind around the differences and correlations between heart structure and electrical structure. How often are electrical systems out of whack in structurally normal hearts?
Another quick note: Two nights ago I had a mini-episode of one of my scary rhythms and when I tried to record it, it got the 30 seconds preceding, then "lost signal" (during the chaotic beating) then picked up immediately after when my heart went back into rhythm. According to the nurse, the recording showed NSR then a flatline then Sinus Tach. I find it very upsetting to know that I had one of my episodes and mysteriously, the monitor loses all signal during the exact moment my heart wigs out. When I asked her how it was possible, she said I must have moved. Well, I didn't move because I heard it squealing out my beats, then I felt my heart freak out and the monitor went to a single high-pitched tone, then when my heart came back into rhythm, I could hear the "beep, beep, beep" of my heart beating again. She told me that it "had" to have lost signal because otherwise she would have seen "at least a p-wave and not just a flatline". Has anyone else had a similar experience with the Heartrak Smart? I don't think I slept at all that night!
1. If I don't catch all of these rhythms (they happen about once a month to once every 6 weeks), should I push for another event monitor just to be sure? Can anyone be blamed for wanting to be absolutely certain when they're getting nasty rhythms regularly?
2. Can I request an EP study? Should I?
3. What is the indication in these situations? When someone is having episodes lasting up to about 30 seconds and they are pre-syncope with no detectable carotid pulse, is this something they should just shrug off? Are there benign conditions that could cause this? The cardio said it's probably SVT (and Afib), but I keep going back to descriptions of that sensation and most people will say that it feels regular but fast. Mine never feels regular or exactly fast for that matter.
Rhythm 1: Started at age 14. Kicks off with a hard beat then feels kind of like a pin-ball in a machine - all over the place. Fast, slow, pauses, sometimes it feels like it's beating from different places at the same time. They usually last from 5-10 seconds. They always terminate as quick as they start, but sometimes it's with a fairly quick series of regular, but light, rapid beats.
Rhythm 2: Started in my mid-20's. Doesn't feel like anything starts it. I feel like my heart expands and quivers. At first I thought it was just a long pause, but after feeling a few, realized that I can feel something happening down there, but it definitely doesn't feel like a beat. I don't feel a carotid during this, and they terminate with thud.
Rhythm 3: First occurrence, July 22, 2010. Lasted for about 30 seconds. Started off with these light, "blips" in my chest. After a few seconds it kind of felt like Rhythm 2, but there was another beat going on at the same time, but it felt like it was an incomplete beat. So hard to describe. Like the upper and lower were both beating, but at different times and way different speeds if that makes sense. I felt my carotid after a few seconds and got nothing. This one I actually ran out of my shop in case I keeled over. When it ended I was short of breath and seeing spots.
I guess that I mostly just need information or advice. I'm just feeling at my wits end and am terribly frightened. I'd like to be able to ignore this, but I just can't anymore. :(
Over the past year my heart has acted very irritable, primarily around ovulation and menstruation. I dealt with it for a year, but since April 1st, I've been getting long runs of three different types (they all feel very distinct) and I returned to my GP on June 25th to be evaluated. She ran blood tests: CBC, electrolytes, thyroid and hormones. The only tests that came back out of range was my progesterone at 7 points above max for follicular phase. This didn't seem all that out of the ordinary. She determined hormones were not causing my excitable heart. My TSH came in at .6, .3 being bottom of normal. Hyperthyroidism runs in my family and my TSH has been steadily decreasing for over a year now. I am also getting night sweats and waking with a pounding heart early in the mornings. But, this could be practically anything, I understand this.
The holter came back with just 2 PAC's - which was a huge disappointment because that particular day, my heart was acting angelic. It NEVER does that! (Maybe they should prescribe Holters as therapy? LOL) A week later and I was in palpitation horrors. A week after that and I had the worst episode of my life, my heart beating erratically for well over 20 seconds during which time I couldn't feel a carotid pulse and I nearly passed out.
My GP referred me to a cardiologist, who although is very handsome (lol), was ready to deem me completely healthy based solely upon my 6/25 ECG. He told me that I wasn't going to die, I wasn't experiencing life threatening arrhythmias and that there was nothing to worry about. He wasn't concerned about me nearly blacking out, saying only that actually passing out was of more concern. When I pressed him for how he knew this without a) catching one of the 3 long, bad rhythms on a monitor or b) evaluating my heart further, he told me that he could tell by my ECG. I asked him what the likelihood of my heart being structurally abnormal with a clean ECG would be and he said 1:1000.
I wasn't exactly thrilled with this because I felt that it was a brush off and minimization of my symptoms, which to me, seem very severe - and terrifying. He did however set me up with a 30-day event monitor and before I left he came out into the hall and told me he wanted to do a quick echo to reassure me. This made me feel as though he was actually aware of my concerns. The tech echo'd me for about 20 minutes before he came in and asked her for a few different views. He said, "Looks great," and told me that he did want a complete echo study and to come back in a week. So, I'm scheduled for a complete echo on Tuesday.
I'm long-winded so you'll have to excuse me. Now I'm at the point where I'm beginning to worry about this event monitor not catching any of my three bad rhythms. Providing my echo comes back clean, would any of you push for an extension on the monitor? I realize that a structurally normal heart is generally an indicator of health and a low chance of sinister arrhythmias, but I only have one heart and do want to know exactly what I'm dealing with. I'm having a really hard time wrapping my mind around the differences and correlations between heart structure and electrical structure. How often are electrical systems out of whack in structurally normal hearts?
Another quick note: Two nights ago I had a mini-episode of one of my scary rhythms and when I tried to record it, it got the 30 seconds preceding, then "lost signal" (during the chaotic beating) then picked up immediately after when my heart went back into rhythm. According to the nurse, the recording showed NSR then a flatline then Sinus Tach. I find it very upsetting to know that I had one of my episodes and mysteriously, the monitor loses all signal during the exact moment my heart wigs out. When I asked her how it was possible, she said I must have moved. Well, I didn't move because I heard it squealing out my beats, then I felt my heart freak out and the monitor went to a single high-pitched tone, then when my heart came back into rhythm, I could hear the "beep, beep, beep" of my heart beating again. She told me that it "had" to have lost signal because otherwise she would have seen "at least a p-wave and not just a flatline". Has anyone else had a similar experience with the Heartrak Smart? I don't think I slept at all that night!
1. If I don't catch all of these rhythms (they happen about once a month to once every 6 weeks), should I push for another event monitor just to be sure? Can anyone be blamed for wanting to be absolutely certain when they're getting nasty rhythms regularly?
2. Can I request an EP study? Should I?
3. What is the indication in these situations? When someone is having episodes lasting up to about 30 seconds and they are pre-syncope with no detectable carotid pulse, is this something they should just shrug off? Are there benign conditions that could cause this? The cardio said it's probably SVT (and Afib), but I keep going back to descriptions of that sensation and most people will say that it feels regular but fast. Mine never feels regular or exactly fast for that matter.
Rhythm 1: Started at age 14. Kicks off with a hard beat then feels kind of like a pin-ball in a machine - all over the place. Fast, slow, pauses, sometimes it feels like it's beating from different places at the same time. They usually last from 5-10 seconds. They always terminate as quick as they start, but sometimes it's with a fairly quick series of regular, but light, rapid beats.
Rhythm 2: Started in my mid-20's. Doesn't feel like anything starts it. I feel like my heart expands and quivers. At first I thought it was just a long pause, but after feeling a few, realized that I can feel something happening down there, but it definitely doesn't feel like a beat. I don't feel a carotid during this, and they terminate with thud.
Rhythm 3: First occurrence, July 22, 2010. Lasted for about 30 seconds. Started off with these light, "blips" in my chest. After a few seconds it kind of felt like Rhythm 2, but there was another beat going on at the same time, but it felt like it was an incomplete beat. So hard to describe. Like the upper and lower were both beating, but at different times and way different speeds if that makes sense. I felt my carotid after a few seconds and got nothing. This one I actually ran out of my shop in case I keeled over. When it ended I was short of breath and seeing spots.
I guess that I mostly just need information or advice. I'm just feeling at my wits end and am terribly frightened. I'd like to be able to ignore this, but I just can't anymore. :(
You poor thing. I really know how scary this is. My life also feels as if it is on hold, I had to cut a working holiday in beautiful Scotland short and come home to get this sorted. It was heart breaking. I was having SVT attacks and I had no idea what was happening to my body.
But we'll get through it and be stronger on the other side! =)
Stay positive. There will be an end to all this.
It does sound like it could be a junctional rythm. When I have it happen, the best way to describe it is that it feels like my heart is ''confused''. It's like a slow blob blob feeling, haha. It is very hard to explain.
It could also be Sinus Node Dysfunction. But I am not sure. Your entire heart muscle is capable of firing off electrical signals.
I am being investigated for SND, as sometimes my sinus node just starts firing off at random or too fast, or perhaps it is a completely different cluster of cells that are firing off. I won't know until my EP study.
I would push for another monitor, or even ask for an EP study. Tell them how much it's ruining your life. If your cardio isn't phased that you're nearly blacked out, then you need another cardiologist. Near synoscope is NOT normal.
You know your body, and know what's OK and what's not.
I know it's hard, but you have to make this change happen. Noone was taking me seriously and I just decided I wasn't giving up and just living like this. I am 22 and there's no way I am just ignoring it. Be persistant. I know how depressing it can be, but if your cardio isn't moving you forward, then get another one.
Are you taking beta blockers?
But we'll get through it and be stronger on the other side! =)
Stay positive. There will be an end to all this.
It does sound like it could be a junctional rythm. When I have it happen, the best way to describe it is that it feels like my heart is ''confused''. It's like a slow blob blob feeling, haha. It is very hard to explain.
It could also be Sinus Node Dysfunction. But I am not sure. Your entire heart muscle is capable of firing off electrical signals.
I am being investigated for SND, as sometimes my sinus node just starts firing off at random or too fast, or perhaps it is a completely different cluster of cells that are firing off. I won't know until my EP study.
I would push for another monitor, or even ask for an EP study. Tell them how much it's ruining your life. If your cardio isn't phased that you're nearly blacked out, then you need another cardiologist. Near synoscope is NOT normal.
You know your body, and know what's OK and what's not.
I know it's hard, but you have to make this change happen. Noone was taking me seriously and I just decided I wasn't giving up and just living like this. I am 22 and there's no way I am just ignoring it. Be persistant. I know how depressing it can be, but if your cardio isn't moving you forward, then get another one.
Are you taking beta blockers?
I have three different rhythms, all very distinct so I really don't know at this point. It's never been caught so no one can give me answers. The last one I had I was pretty sure I'd bit it and everything started going grayish and I got weak, just as I ran for help my heart snapped out of it. It was terrifying.
The three lengthy rhythms are never what I'd call fast or even slow. One is jumbled and there's no rhyme or reason to it, slow, fast, pauses - feels like the top and bottom are out of sync and competing with each other to see which one can beat the strangest first, LOL.
The other two just feel like quivering - one is straight quivering, almost like an enormously long pause but I can feel motion in my chest, the other is quivering with this odd abrupt sort of half-beat underneath the quivering. I know the quivering is my heart and not a muscle spasm in my chest, because I just know, LOL.
My issue is now that I'm worried all three won't be caught because they're intermittent and I really need them to be for my peace of mind. It's all well and good sending me on my way, but I feel like they need to be investigated. Hence the post. Has anyone been in this situation before - where a one month hasn't caught it but you get them between once every 4-6 weeks so you know one is coming, but you're two weeks off on the monitor. Should I push for another 30 days?
What do your junctional rhythms feel like? Mine are so chaotic that they are hard to describe.
I'm just so sick of the not knowing and the fear that it's something worse than they assume. I'm also sick of putting everything on hold because I'm afraid I'm going to drop dead any moment. It's awful. It's kind of like having a growth that's suspicious but they won't biopsy it to see if it's something bad, they just watch it grow...
The cardio I talked to wasn't phased when I told him that I'd nearly blacked out.
The three lengthy rhythms are never what I'd call fast or even slow. One is jumbled and there's no rhyme or reason to it, slow, fast, pauses - feels like the top and bottom are out of sync and competing with each other to see which one can beat the strangest first, LOL.
The other two just feel like quivering - one is straight quivering, almost like an enormously long pause but I can feel motion in my chest, the other is quivering with this odd abrupt sort of half-beat underneath the quivering. I know the quivering is my heart and not a muscle spasm in my chest, because I just know, LOL.
My issue is now that I'm worried all three won't be caught because they're intermittent and I really need them to be for my peace of mind. It's all well and good sending me on my way, but I feel like they need to be investigated. Hence the post. Has anyone been in this situation before - where a one month hasn't caught it but you get them between once every 4-6 weeks so you know one is coming, but you're two weeks off on the monitor. Should I push for another 30 days?
What do your junctional rhythms feel like? Mine are so chaotic that they are hard to describe.
I'm just so sick of the not knowing and the fear that it's something worse than they assume. I'm also sick of putting everything on hold because I'm afraid I'm going to drop dead any moment. It's awful. It's kind of like having a growth that's suspicious but they won't biopsy it to see if it's something bad, they just watch it grow...
The cardio I talked to wasn't phased when I told him that I'd nearly blacked out.
I can honestly understand exactly how you feel.
It sounds like it *may* be A-fib, but this is hard to say. Does it feel irregular? How fast is the rate?
I have experienced that feeling of the double beating. It's strange and scary. I always run and grab someone to make sure I'm ok.
In my experience, I'm 99% sure it's actually a muscle spasm and not my heart. It seems to occur when I am in tachycardia. So you *could* be feeling a muscle spasm alongside your tachycardia / arrhythmia. But I'm not saying that's the case at all, it is just the case for me. *I think*.
I experience strange junctional rhythms and SVT, and also just general sinus tachycardia. I am having an EP study to try and figure out what on earth is happening down there and how I can make it stop!
I know how hard it is to get doctors to listen. They only started taking me seriously when I said I was blacking out.
It's hard, and they act like you should just live with it. Yeah right!
If your current cardiologist isn't doing anything to move forward, get a second opinion, or tell them you recently blacked out (white lie won't hurt if it means getting yourself an answer) They instantly sit up straight and listen to everything you have to say and will treat you differently. Trust me on that!
It sounds like it *may* be A-fib, but this is hard to say. Does it feel irregular? How fast is the rate?
I have experienced that feeling of the double beating. It's strange and scary. I always run and grab someone to make sure I'm ok.
In my experience, I'm 99% sure it's actually a muscle spasm and not my heart. It seems to occur when I am in tachycardia. So you *could* be feeling a muscle spasm alongside your tachycardia / arrhythmia. But I'm not saying that's the case at all, it is just the case for me. *I think*.
I experience strange junctional rhythms and SVT, and also just general sinus tachycardia. I am having an EP study to try and figure out what on earth is happening down there and how I can make it stop!
I know how hard it is to get doctors to listen. They only started taking me seriously when I said I was blacking out.
It's hard, and they act like you should just live with it. Yeah right!
If your current cardiologist isn't doing anything to move forward, get a second opinion, or tell them you recently blacked out (white lie won't hurt if it means getting yourself an answer) They instantly sit up straight and listen to everything you have to say and will treat you differently. Trust me on that!
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