[bypeep]

Hi everyone,

I have been silently stalking your forums after seeing a link to this site from the Medhelp.org "Heart Rhythm" forums. Part of me finds your words reassuring, but there is definitely another part of me that is simply screaming for an answer.

My first "flutter" occurred when I was 14. I was running sprints in gym class and after a cool-off period, my heart continued to race just like I was still exercising. This continued for about 2 hours when I got the crazy idea of getting into a cold shower. As soon as I stepped into the stream of cold water, my heart immediately returned to a normal rate.

My second "flutter" occurred a few months later when I woke up at 3:00am with the strange sensation of my bed and every square inch of my body pulsing in time with my heartbeat. It was uncomfortable and I can honestly say that my life has been forever changed since that night. I don't know what it's like to not feel every single beat, funny ones included as well as blood pressure changes and the effects of other organs pressing up against that area. It's horrible.

My third flutter was a few weeks later and it began with an extra beat that occurred only (but every time) I took a deep breath. Later that same week I had an entire night of what felt like a fish dancing and flopping in my chest. There were long periods of time that I waited for a normal beat, but it just didn't want to. I was dizzy and disoriented that night and went to sleep just knowing I wouldn't wake up.

My fourth "flutter" was later on that next summer, I was still 14. I was working in a snack-bar and was just standing there mid-morning when my heart started to lurch and shimmy all through my chest. The entire episode only lasted between 5-10 seconds but it seemed like a lifetime. I have no idea what was going on, all I can say is that it started with a single hard beat then was all over the place. It wasn't a regular rhythm, nor was it essentially fast. It went fast, slow and was kind of like it was a ball inside of a pin-ball machine. I have no idea what my pulse was like during this as I was just clutching my chest and holding my breath.

That one sent me my mother, who called my Dr., who suggested I go to the ER and have a rhythm strip. Of course my heart had stopped acting up and it was normal. They sent me away with a diagnosis of Anxiety and loaded me up with Xanax and Valium for the remainder of high school. All the while, my heart continued its flipping and flopping, peaking around the time I was 17.

I finally complained enough to get them to do a holter monitor, they said it came back normal - just PVC's and PAC's. Not sure which one I had more of or the manner of each as back then they didn't like to hand out medical records.

Two years later and several more trips to the ER I convinced them to do another holter. This came back with about 800 episodes of PVC and PAC. Again, no clue what the breakdown was. Now they prescribed me Nadolol (Corgard).

They did an echo which showed normal (as far as I know) even though it was terminated early because I freaked out when they turned on the speakers. They wouldn't turn them off and hearing my heart jiggling around was more than I could handle because the whole thing had me so wound up to begin with. So, yes, I can see how they'd diagnose anxiety. Problem is, I was never "anxious" prior to the onset of all these symptoms.

Fast forward 20 years. I'm now 35. I enjoyed several good palp free years, minus one when I became pregnant and they were relentless (I miscarried 4 months in - and was actually glad because I was sure that any longer and I would have keeled over).

Last year my heart got agitated again for some reason. And, with the internet and being older and having more access to possible complications of arrhythmia, I have Googled myself into complete and total reclusion.

See, the problem is that the big bad rhythms have never been recorded. I have no idea what they are - all I know is that they always last about 5-10 seconds and they freak me out beyond belief. I have 3 major rhythm problems, and a few distinct minor.

1. Starts with a hard beat then rolling, flopping, somersaulting for several seconds. Feels all at once slow and fast and very irregular. Sometimes stops abruptly, others it will terminate with a quick light, fairly rapid beat that lasts for 5-8 beats before it immediately drops (in just one beat's time) to a normal rate and rhythm.

2. A couple of times a year I will feel a strange sensation which I will describe as a simultaneous squeezing and expanding then a quivering that lasts for 2-10 seconds before terminating with a long pause and then a hard beat. It feels like there is a balloon in my chest and it's just twitching.

3. On occasion, I will get a fairly rapid, light beat that is not normal, usually 5-10 beats, very regular. Then just a quick as it starts, no compensatory pauses on either end, it will go back to normal.

The trouble with all this is that from what I read, everyone experiences their own particular rhythm issues uniquely. Meaning, someone might describe NSVT and I might be like, "OMG, that sounds just like what I have," but another might describe their PSVT in the same way.

I had a holter monitor recently and it picked up ONE PAC. That's it. Of course, it was right after my period had started so I expected it to be clean as these things usually plague me from ovulation until Day 2-4. My ECG was normal too, but they always are because these things only ever happen when I'm not hooked up to something.

My latest symptoms are actually a day-time bradycardia (as low as 38bpm at 2:00pm in the afternoon!) combined with slight tachy upon position changes, but not all the time. Last week at 4:00am every morning I was waking up with a racing heart and sweating. Sometimes waking up at regular time like that too. But, it comes and goes. The slow heart rate happens about half the month, the constant tachy the other half. My hormones show up as completely normal during the follicular phase, with the exception of my progesterone which is slightly elevated for the cycle day it was drawn on. 157 as opposed to a max range of 150.

I just need to know so that I can face it or get on with my life. I am a basket-case after a back-to-back monster episodes on 6/14 and 6/15. I have a referral in to see a Cardiologist, but no appointment has been made yet. How can I make it clear to her that I'm done mucking around with this and need to know for my own sanity without coming off like a freak? They only way they can catch this is with 30+ day monitoring or an implantable. I understand my work-up was negative 20 years ago, but I don't get how my doc can assume that nothing has changed. No, there is absolutely no family history of heart disease on either side, oddly enough. But is this enough for her to know for sure and just brush this off as "Oh, you're probably having runs of PVC's" like it's nothing.

How should I approach this appointment? What kind of monitoring options are available in light of the fact that this problem, while mentally debilitating, is sporadic.

And, most importantly, how in the freaking hell do I stop worrying about this day in and day out. I don't dare to leave my house, have the phone more than a foot away and can't stand to be alone anymore. The now knowing is ruining my life and I can't take it anymore.

[jayone]

Hi bypeep,

I actually enjoyed reading that, I was nodding most of the way through it saying "thats me. Yep, there's me again".

I didn't have my onset until I was about 17-18. I developed anxiety after choking and this brought on all sorts of heart issues.

The anxiety has subsided but the heart issues have been with me for 7-8 years now (now 25).

I too freaked out during my echo. I was such a wimp I had my girlfriend hold my hand all the way through it. Turns out my heart is in great shape though.

Now these skipping episodes you talk about I can relate to. I often think of my heart getting tangled up but your pinball analogy is probably how I'd describe it best.

Google is a dangerous place. The number of times I have worked myself up over reading Yahoo answers where those nasty, points seeking, users comment with "RUSH TO ER NOW!". Those really do work you up.

Don't let these destroy your life. You know you have them, as do I, and we'll probably have them for the rest of our lives, the best thing you can do is not to worry over them as this will make things worse.

I read a great post on another forum by a medical professional about how the vagus nerve contributes and is possibly causing these issues. I really wish I could find the post again because I related so much to what she was saying.

There was an episode I had the other day and I though to myself "this is my final day today". But hey! 5 days later I'm still here and have not had an episode as bad as that day (thankfully).

One of my worst experiences was about 2 months ago. I was on the train from my holiday and I was getting multiple PACs/PVCs that knocked the wind out of me every time. They came on so hard that they actually made me jump when they happen. Although I think the jumping is just sheer shock.

Stick around on the forum, it's a quite place at the best of times but the people here have all experienced what you and I have and will answer in due time.

If you want to talk on MSN/AIM pop me your email address and we'll have a chat. It's often good to talk to others and compare our troubles.

James x

[poohbear2026]

I too can relate to your story. Mine started at about 17 and now I am 35. Back then I didn't think I would make it this far. I am better now, but still get days where I think it is my last. I actually had NSVT caught on my monitors twice, so I freak out everytime I feel what I think is NSVT. The Drs tell me that even with that I don't need to do anything unless it goes over 30 seconds or I start passing out. I have had EKG's, nuclear stress tests, monitors (event and holter), and a cardiac MRI. All tests come back normal except for PVC, PAC and NSVT. I do take Paxil (although I think it makes it worse) and Ativan on really bad days. They also gave me a beta blocker to take during bad episodes but I have been too afraid to take them. I am afraid it will slow my heart down too much.....and my mom just had to have a pacemaker..which that just makes me worry even more. Her problem just happened all of the sudden when she got sepsis in her finger. So I know how you feel with the anxiety, some days are just awful but you can find help. I hope your next appointment goes well. Keep in touch.

Anita

[sparky]

Bypeep, you are to be commended for such a detailed, heartfelt (absolutely no pun intended, no other way I can say it) introduction and explanation of your ticker trouble. Not to be redundant, but you have absolutely described mine too! Mine started as a kid (age????) and much better at 41 now, but it still lets me know it's there once in a while.

You will prevail - you can do it. You are well read & really informed, but you just need a hug right now so here's a hug from all of us. We care about you and are glad you are here. It's no accident you are here, and already many people have actually been blessed just by having the privilege of reading what you have been thru. I know I have!

I have taken the approach of trusting modern medicine less and learning more about nutrition/attitude/fitness/whatever.... Some here will nail down every med ever invented for this, and with great detail, side effects, ect. Some will be great encouragers and listeners. Some will have monitor expertise. Some will just chime in to say 'yeah that stinks!'. All in all you can't go wrong here. Any one sufferer may not get what they are specifically looking for here, but I have found it to be a safe place to pop in and out of from time to time.

Summer's in full swing & many of us are not in front of the computer (a good thing!). By this winter you will be swimming in posts here. Keep everyone posted and so good to hear from you.

Sparky

[jkfrench]

Hi Bypeep,
Thanks for that great post. Yes, I hate to be redundant but I could have written that about myself.
Mine started when I was 17. Or at least that is when I first noticed it. I was spending the night with a friend after going to a party and my heart woke me up pounding and beating so loudly that she could hear it. I was sure I would die. Fast forward 30 years later and I'm still here feeling the same crap. Ask for the 30 day monitor. I think that could bring you some peace of mind. My scary ones have never been caught either. I get a long pause and then my heart switches gear and beats at 220 bpm for sometimes just seconds or sometimes over 5 minutes. I hate it! I describe these to my doctor and he just doesn't seem worried. The other ones that have never been caught are when my heart just beats normally and then pauses for a beat then beats normal and so on. There is no early beat (PVC) prior to the pause so this bothers me because I can't justify why my heart just decides to stop in between beats.
I have mentioned these books before, but I will again. Hope and Help for your Nerves and Peace from Nervous Suffering by Dr. Claire Weeks really helped me with some of the issues you are experiencing such as not wanting to leave the house. We fuel these skips with anxiety and it because a vicious cycle inside our minds. Our body is on "stand alert" at all times and very sensitized to any thought. You have to break that cycle in order for the heart to settle down some.
As for the bradycardia. I had that too. The vegas nerve can stimulate your heart to slow down just like it can stimulate it to speed up. It is called a vaso vagal attack.
I was getting those for almost a year after my daughter was born. Again, my doctor told me he wasn't concerned because it would speed up with exertion or exercise. The concern would be if it remained at that low rate when your exerted yourself.
You can do it and we are always here for you. This forum is still new and growing. We have people join daily and your input can help them so please stay in touch. I want to hear how your doctors appt. goes.
Take care
Jodie

[bypeep]

Hi Guys,

Thanks for all your support! My doctor's appointment went as expected - couldn't find anything wrong. ECG was NSR with no abnormalities. My thyroid was at the very low end of normal - not low enough for her to consider Hyperthyroid (which would explain some of this) - only .3 points away from it though. CBC and Electrolytes, normal as usual. My holter showed one PAC in 24 hours. A week later - and of course off monitor - it turned into a freak show.

Yesterday I had the worst episode I've ever had in my entire life. I thought it was all over. Came home intending to write my will and letters to my family members. I've been on edge ever since. Terrified to be alone and waiting for the next bad attack.

This is what happened. I was at work, nothing stressful, and I was talking to this customer out in the hall and realized I'd left another customer alone in the shop so I walked back in. On the way to the counter I felt a few light "blips" in my upper chest and ignored it like I usually do. A few steps later, the counter was only a few feet away, it was still doing it. I immediately went to take my carotid pulse (obsessive habit) and there was none. I could feel my heart quivering/jiggling inside my chest over and over again, but no pulse. Then finally a hard pulse, then none for about 7-10 more of the quiver/rolls, then a beat, then no pulse for several more seconds. I was so panicked that I started to run out of the shop to the neighboring shop to have them call 911 and it came out of it. I think all together it lasted for about 20-25 seconds. It just felt like it was lightly quivering in my chest for a few seconds then a strange incomplete beat, over and over and over. Towards the end I started feeling kind of funny, like I was going to pass out. When it came back into rhythm it was thudding really hard, and I'm sure this was from an adrenaline rush. I didn't have time to try vasalva because I was waiting to pass out.

I have no idea what happened, am absolutely terrified of it happening again. Of course, I have convinced myself that I had a long run of polymorphic v-tach. See what knowing too much will do to a person? I cried all evening and was teary eyed all day today. I have no idea how to get through this. I'm a basket-case.

I have an appointment with a Cardiologist on Monday and I think the hardest part is waiting. Three days seems like a long time when you're convinced you're going to keel over at any given moment. And, to make matters worse, I know that the only way to find out what happened is for it to happen again.

I will ask for a 30-day monitor or at least one that I can send readings in as they happen so that I can feel a little bit of reassurance at least. But, probably I'll turn into a freak-show and ask for a defib-vest and they'll refer me instead to a psychiatrist.

This is just horrible.

I'm praying that the sensations I felt were worse than the rhythm that was going on. It's so subjective and I have no way of knowing so it's eating at me. Anyone ever experience anything like this and have it be benign?

Will update after Cardio appt for those interested.

[jkfrench]

Those are exactly the kind I get that scare me to death. They have never been caught because it only happens a few times a year. (those type) The skips happen every day.
The pause is unnerving. You just feel like you are leaving your body. It is hard to explain but it is much longer than the pause in between PVCs.
I hate it and it sets me back for days when it happens. My doctor doesn't seemed worried about it, and told me that if it started happening every day that we might look into it. He also told me if I am able to jump up and run outside for help (like you did) that it most likely isn't something life threatening. Which does make sense. It is just so damn scary. Hang in there and let us know what your doctor says today. Try not to worry. I am sure you are fine.

Jodie

[bypeep]

Well the Cardiologist was reassuring. He even went so far as to do a quick echo before I left to make sure there were no gross abnormalities with my heart structure. I am scheduled to go back next Tuesday for a complete echo w/contrast. He told me that, and this is like the mantra for medhelp.org lol, in a structurally normal heart, even a bad rhythm will correct itself. That I will not fib and I will not die. He told me that there are a lot of patients he worries about, and I'm definitely not one of them. However, he does want to investigate the rhythms because they sounded to him like afib, SVT and A flutter - I have 3 distinct odd rhythms.

I have the event monitor on right now but I forgot to ask if it only starts recording when I press it, or if it pulls up the last few seconds of heartbeats. I don't want to miss something because I couldn't get my hand up there in time.

Knowing that my heart looks good (very brief echo just for major structural issues) makes me feel like I just might survive until my wedding, LOL.

I feel like such a panic, but my god, I only have one heart and I need the sucker to beat NORMAL.

You guys are great and I so appreciate all your kind words.

Will write more after my "real" echo on Tuesday of next week.

Thanks!

[jkfrench]

That is always good to hear. Even though we have heard it over and over I can't get tired of hearing a doctor tell us that "if you have a structurally normal heart, everything is usually benign".
The event monitor pulls up a certain amount of time prior to when the button is pushed so you should be all set and nothing will get missed.
Take care
Jodie