[poohbear2026]

Just wanted to vent about these crazy things...I keep getting them all this afternoon. The really long ones that feel like your heart is just going to stop. I get so light headed and tired with these things. So wish they would just go away.

Anita

[bypeep]

Poohbear,

I completely sympathize with you! I only wish that I could do something to make them better. I have about one week a month that my heart acts normal, then I have a bad heart week during ovulation, a bad heart week during PMS and a bad heart week during my period. It's really quite frustrating.

When you say the really long ones, do you mean that you are getting runs or just that the PVC's feel extended in some way? How long are they lasting? I know from reading your posts that you are suffering from NSVT and I can only imagine the level of anxiety that diagnosis as well as the sensation of the palpitations cause. I don't get my runs as often as you, but I have been getting one good one a month.

Mine are as of yet undiagnosed, but I can't imagine that what I'm experiencing is simply a run of PAC's or SVT as there is absolutely no regularity about the episodes. Mine feel like I have a bucking bronco in my chest and that the top and bottom of my heart are beating of their own accords and at different rates - competing almost. It's terrifying.

One thing that I noticed was that they caught only a 5 or 6 beat run of NSVT on your holter, yet gave you a cardiac MRI to rule out, I assume, ARVD. Many of the people that I see on medhelp.org have a similar diagnosis but their cardio's only went as far as the echocardiogram. At least you have that little bit of reassurance, but still, when every second of a run feels like your last, it's not very much, is it?

Have you gotten a second opinion or considered going to an electrophysiologist for potential ablation (is this even an option)? If I was you, I would just wait for the day that the NSVT turned into sustained. I'm not sure I would be able to convince myself that it wouldn't. Last Thursday I was positive I'd be dead in a week and while I had a moment or two's worth of peace of mind after seeing my new Cardio on Monday, the anxiety is back and I'm all gloom and doom again, LOL.

How long are the ones today lasting? Has anything about your routine changed that might have triggered them? I have noticed over the past few months as mine have gotten worse, that even a candy bar is out of the realm of possibility. Last night I snuck a Milky Way Caramel and ended up filling up my monitor and having to call it in at midnight. My heart was getting all out of whack, some of the hard beats were audible and felt like something was punching me from inside.

I hope that by the time you read this your heart has settled down. Do you take Beta Blocker's by chance? I take 40mg of Nadolol and it's my savior. Within a half hour of popping one my heart settles down (for the most part - it doesn't stop the nasty discombobulated runs) and I'm less aware of it.

Will keep you in my thoughts.

Stacy

[poohbear2026]

Stacy,
Thanks for your reply. Today, maybe one episode might have been NSVT the others just felt like a long skip between beats. Over the years I have actually had at least 3 cardios and one electrophysiologist at Duke. He was the one who did the MRI and said ablation was not necessary because there was no scar tissue. They did give me a beta blocker (inderal, and metroprolol) to take if I have really bad episodes...but I hate to take them because of side effects.
Yes, mine get worse that time of the month and I am never regular so once again I am late and they seem to get worse when I am late. I also get them around ovulation too. I too have also recently been diagnosed with Celiac. The gluten free diet has actually seemed to help with my anxiety and I don't seem to have as many days that the palps bother me but boy when they do they come on strong. Oh well, praying tomorrow will be palp free.

Thanks again,
Anita

[bypeep]

Anita,

Wow. I'm actually shocked by your response. I tried telling my GP that when mine is delayed, I get a severe heart response. In fact, in April, June and July I had a late period, each time by about a week. Those were the three months that I had the horrific runs. My palps during ovulation are entirely different than the runs though. About two days before I'm due to ovulate, I start up with what I consider to be something akin to IST. My heart will speed up with any little thing I do. This includes rolling over in bed, standing up (in particular!) and when I'm in the shower oddly enough. It's more than an annoyance, it's rather debilitating. I also get extremely hard, quick palps during this time. They caught some on tape and they are PAC's, though I was shocked because of the sheer force of them. I would have thought they were PVC, but nope.

I get the runs just before and just after my period starts. Generally, I'll have one, maybe two - but different types. If I don't have one this month while I'm on the monitor, I'm seriously considering purchasing my own monitor, LOL.

About four days after I start, my heart turns in to an angel and I enjoy an entire week of happy heart days. Since my cycle is about 21-24 days, I don't get much of a break from the hormonal heart cycle.

Have you had your hormones tested? I'm 36 and this past year my period has been acting funny. It's hard to describe. Late some months, scanty others, heavy others. Definitely not my normal, on schedule period. I assumed that since most of the women in my family were completely done with menopause by their early 40's that I must be entering perimenopause. I had my hormones tested at the end of June and the only thing that came back off was my progesterone which was 7 points higher than the max just 2 days into my cycle. I'm not sure if this could be causing it or not.

Since it's not happening to them, and in some cases, they've never experienced a run or cluster of palps, they don't get it and don't seem to care too much. It's so frigging easy for them so say, "Just ignore it and get on with your life." And the kicker is that they will say this without even having the runs documented so they can see if they're garden variety or not!

Are you feeling better today? I did think about you last night as I can completely relate. Hopefully a good night sleep reset that anxious ticker of yours. That's usually the way it is with me. I can be plagued with them before bed and wake up feeling awesome. Mine will always begin after I eat though so I hold off food until around 2:00pm. I have no idea what the correlation is, but I can't eat anything with carbohydrates without setting my heart off for hours on end.

I'm surprised that they went to the extent of testing that they did. When I went to the cardio last Monday, he looked at my ECG and was ready to pronounce me fit as a fiddle and send me home. He hadn't caught any of my bad palps and hadn't even run an echo. When I questioned him he decided to run a mini-echo for reassurance. I have to go back on Tuesday for an echo with contrast. Not that they saw anything (that I know of), but he wants a complete study. I haven't had an echo since the early 1990's so I'm sure the technology has improved greatly since then.

He told me that I'm most likely having SVT - a fact that I disagree with. There is nothing regular about my runs. I also have no pulse in my neck while they are happening which terrifies me more than anything. He also said that how I describe them sounds like short runs of A-fib, another fact I disagree with. But, I'm not a Dr. and he made sure that I knew he'd been doing this for "22 years and I worry about a lot of patients, and you're not one of them." I wish that I could be so confident. When reading your posts about your NSVT, I immediately think that our symptoms correlate and I worry that might be my issue too. Sometimes I wish that I could just go to a hypnotherapist and have them a) condition me to NOT feel my heartbeat every second of the day and b) be unafraid. If only it were that easy.

How were you able to get extra testing based on your 5-6 beat run? Was it polymorphic or something? I'm going to ask for a stress echo when I go back - but I also feel that echo's may not give a lot of information about the electrical system. I just don't get how they can say that you don't have an electrical problem just by viewing grainy black and white sonar images of heart muscle.

Was this all at your Dr.'s prompting or were you pushing for additional studies? I know I sound obsessive, but I'm just trying to get a handle on how to approach this whole process.

Again, hope your heart is behaving today. Take care, Anita.

Stacy

[poohbear2026]

Stacy,

Thank God, no noticeable palps this morning. I took an Ativan last night and was finally able to go to sleep. I had my hormones checked about 2 years ago and my progesterone was a little off but not too bad they gave me the natural progesterone to take. I don't take it anymore though, I probably should. Also, I have been getting some night sweats especially during ovulation and pms so my dr thinks I am going into perimenopause too(I'm 35). The 5 and 6 beat runs were found while wearing a monitor and they sent it to the dr but did not send me to the er. The doctor was a little concerned at first and sent me for another nuclear study and an echo but said if they could find no scar tissue then it would not hurt me. He only sent me to Duke because it was scaring me so bad that I would be in tears at his office thinking I was dying. So that is how I got the MRI. The electrical dr at Duke didn't really say it was definitely NSVT but said it looked like it but said those monitors really don't give a really good look at all rythms. He could definitely tell that they were PVC's. But he said in a normal heart even NSVT wouldn't hurt me. So that is when he orderd the MRI and said I did not need to come back if it came back clear unless I had bouts that lasted over 30 seconds or passed out. But he showed me the MRI and explained where the scar tissue would have been if I had needed ablation. I even have a disk with the pictures of my heart beating which is pretty cool. Jeff had wanted me to post pics of it but I was never able to figure out how to get it on here.

Anita

[bypeep]

When you say your progesterone was "off" do you mean low? I'm assuming so since they offered you a supplement. Mine is slightly high. But, she did say that hormones fluctuate so wildly that I could come back in a week and get an entirely different result.

I too have been getting night sweats with ovulation and the day before/after my period starts. I'm also waking at 4:00am-6:00am with a rapid heart beat during these phases. During the days, my heart is absolutely inconsolable. I just ovulated and while I never triggered my monitor when I first got it, that day and night I filled it numerous times. The night sweats began this spring, oddly enough, the same time I started getting my mega-runs. I realize my GP says "no correlation" at this point, but I disagree.

During your runs, though they only encompass 5 or 6 beats, does the actual episode run longer than say 5 or 6 seconds? Mine last between 5 seconds (on a good day) and maybe 20-30 seconds. I can't really tell what mine is doing during my runs because it's so chaotic feeling. I can feel it thumping about in my chest if I put my hand near it, but I don't get a pulse so I'm not sure. And, it's definitely not a normal lub-dub sort of sensation, both what my brain is telling me and what my hand is feeling.

You say you had a nuclear scan, was that to rule out any blockages? Why did they suggest that? My cardio didn't even mention looking into that possibility, but then again, he was ready to ship me home without even worrying about my runs with just an ECG too.

How many trips to your cardio did you make during this whole thing? I feel guilty just bothering mine once, but damn, I'm freaking out! lol

I was supposed to start grad school on 7/28 and I backed out because of this whole mess. I feel like my life is on hold until I find out what is really going on.

What prompted them to do the monitor that caught your NSVT? Had your palps changed or become longer or something? I know I'm picking your brain, but I'm just trying to figure this all out and keep myself sane in the meanwhile.

Thanks for being so willing to help.

[poohbear2026]

No problem. Mine was low only for a few days during the cycle...so I only had to take the hormones a few days a month. When I say runs of 5 to 6 beats...there is no normal beats between those few they are just PVC's....it doesn't feel like just a regular skip. But I don't feel really good for about an hour afterward just from being afraid. I still continue to have regular skips after it. Really strange and gross but right after NSVT I always seem to have diarrhea. My skips usually come one every few beats. The nuclear stress test was to look for blockages, see what my heart did during stress. I have a really good regular dr and she referred me to a cardiologist that she thought would be able to talk to me and calm me down. During my really tough time he even called me to check on me and reassure me and tell me that he was sending me to Duke not because he had found anything terrible just to reassure me. I go see him every 6 months now and he likes to retest me about every year just to make sure nothing has changed (EKG, echo). I think I should be going again this month, its been about 6 months. The monitors was because I get some type of tachycardia that only happens about once a year, but it never gets caught.

[bypeep]

Yes, I understand there are no normal beats between your NSVT PVC's. And, I understand the diarrhea and fatigue thing. After one of my events I literally feel like crawling into bed - and I will have the runs (gastric) later that day and even the next. I think it's stress.

Maybe what I was trying to figure out was how long those abnormal 5-6 beat runs of PVC's lasted for. When I go into my wacky rhythms, particularly the two most concerning - the one where I just feel like my heart is pausing for about 5-10 seconds but there is a quivering motion in my chest, and the most recent one where I had the quivering/pause feeling with this really strange half/partial beat feeling underneath it, I too have no normal beats during the event. You know when you feel that quick double beat you get before the pause of a single PVC, how the actual beat feels incomplete or like there was no blood for your heart to pump to begin with, well that's kind of what I was getting, over and over again for about 20-30 seconds two weeks ago. It was terrifying.

I'm actually a little afraid of relaying my fears to this new Cardio for fear of him labeling me as an anxiety case. I want them to focus on the actual symptoms that are causing the anxiety and realize that it's only after one of these events that I become scared. Of course, I've been freaking out for two weeks now with no let up, LOL.

So if I understand you correctly, your NSVT finding was incidental or were you having those runs and just brushing them off as normal palp runs until you found out what they really were, or was it a totally new symptom that just happened to start when you were on the monitor?

Since your 5-6 beat runs, have you had any that were longer, or can you not actually sense how many of the PVC's you're actually having in a row when it happens?

I have to wonder how many people experience this and don't know it. My step-dad was in the hospital a couple of years ago and he was on a ventilator and induced coma. I would sit beside him and watch his monitor. Every so often he'd throw a PVC and sometimes a run of them and the silent alarm would go off and the indicator for runs would blink. I would get so freaked out, but when no nurses would come in, I started realizing that they weren't concerned. Weird, huh? LOL

I would just love for my heart to beat correctly all the time because this is an awful thing to have to deal with.

Hope your day is going well.

Stacy

[poohbear2026]

When I have a run of NSVT I usually only have one episode a month. I can't really tell how many beats they are so quick. The monitors were really just to check PVCs, PACs, and tachy. The first episode i had I started to not even push the button because I thought it was just the regular PVC's but it wasn't. So I can only tell when they make me feel a little faint....and then they are over. My cardio tells me it is not all in my head, he says you have an irregular heartbeat once in a while but you have a normal heart. But getting anxious about it just makes it worse. My mom was in the hospital last year for a heart rate in the 30s but she also had sepsis. I remember the nurse would come in and look at the monitor when she would have PAC's and say well those are fine at least they are not PVCs those are the bad ones....I was like great....those are the ones I get. She said, have you got those checked out? Cardiac ICU is not the best place for me to hang out for a week, but I felt like I needed to stay with my mom during the day until my dad could get there after work. I actually got through it rather well without having any bad episodes. She had to have a pacemaker and her heart actually stopped on the operating table. So now I am afraid it was something genetic. She never complained of skipped beats just occasional tachy. But now since she has the pacemaker she fells skipped beats occasionally.

[bypeep]

Did the dr.'s mention a correlation between her sepsis and her bradycardia? I mean, was she in the hospital for the heart or for the sepsis and if so, was the bradycardia found incidentally? She's very young, so I too would wonder if there was something genetic. Maybe suggest this to your doc the next time you go in and see if they have any sort of testing they could do. At the very least you might find out what is in store for you down the road. How is she doing?

I find that the internet is worse for me than any doctor I could visit, LOL. But, I can understand your point about what that nurse said. When I was a teenager and first experiencing heart issues one nurse was telling me that "just the other day I bent down to pick something up and my heart went crazy. Thought I was gunna fib!" At that time, I had no idea what fib was, but wasn't long looking it up. Hence more scary information to process, LOL. I think that for a couple of years I was reluctant to bend over for fear of triggering an irregular heart rhythm.

My step-dad shot himself two years ago and when we first met the ambulance at the hospital we thought that he had been beaten up or possibly struck by lightning. We had no idea the swelling around his eyes and bruising was due to a bullet that he'd put through his temple. Two weeks later when he ended up stroking out from a blood clot (he'd been up and talking that afternoon - even moved to a step-down unit) my mother called and told us to come down. I thought that if there was going to be a time my heart would freak out, it would be then. Oddly, I never had a palpitation the day we took him off life-support. I remember my mom asking me when we got to his room, "Did you take your heart medicine?"

I'd assume her heart stopped because of the irritation of the leads or the prodding. Did the doc's give a good explanation for it? I'm the type that needs detailed information before I can wrap my mind around it.

I think that if I could only tell that I was getting palps because of faintness, I would freak out worse than I do with the bucking and quivering I get, LOL.

Hope you had a good weekend.