CPVT??? help :(

[scared1998]

As you may know from my previous post I have been suffering with a strange heart beat for the past few months. The doctor's seemed to think it wasn't an issue and put it down to SVT w/ ectopics, although this is still under investigation.

However, last night I heard about something called CPVT... which is life threatening and the symtoms sound just like what i've been experiencing, apparently it also isnt detected on a resting ECG... I haven't been able to sleep or anything.

When this weird heart beat first occurded it was as I was bending over, and then it happened 6 times during the following 12 hours, each time i tried to stand up, walk, bend over etc. Apparently CPVT is brought on by exercise..

I'm tempted to go to A&E now and tell them I think they have missed this, any thoughts?

[Aaahhfreakout]

I went and had a bit of a read about CPVT.

Catecholaminergic Polymorphic Ventricular Tachycardia is usually brought on by extreme stress or strenuous exercise. It's also very rare, roughly 1 in 10,000 people have it. It causes people to feel palpitations, feel dizzy and often pass out as the heart rhythm is pretty chaotic and inefficient.

If I remember right, they caught part of your arrhythmia before on ECG and said it could be SVT which means it looks very close to a fast, normal heartbeat. If you have a look at an ECG of SVT versus CPVT you'll see there's no way they could mistake one for the other. CPVT looks crazy.

So it's not sounding like they missed CPVT at the moment.

I was having single ventricular ectopic beats any time I moved from February to April. There's no reason why you can't be getting an supraventricular version of that. Hopefully, it also calms down for you as it has for me.

[Rosanna]

The odds are that you don't have this. 1 in 10,0000!!!

The odds are really NOT in your favour of having that condition.

[scared1998]

Thank you both for ur reply..

Yes that's right Aaahfreakout, they did catch some of it on ecg, and said it was possible SVT but also with ectopics..

I have noticed that i can tell when these episodes of lots of ectopics are going to occur, as each time it has happened it occured after my heart race increased which makes me worried it is CPVT, as that occurs with increased heart rate too. I;m also worried because I thought ectopics were less likely to occur when ur heart race increases??

Hope u both are well

[Rosanna]

Scared1998, Many of us have now diagnosed ourselves with this C thing what's it :-P

Only joking. Just keep telling yourself about the odds, the chances are so incredibly low. :-)

[Fishmanpa]

last night I heard about something called CPVT...

Dr. Google strikes again As others are saying, the chances are astronomically small and there's a genetic factor involved as well so that makes it even more improbable.

Why can't you chalk this up to the apparently benign issue your doctor feels this is?

Positive thoughts

[scared1998]

Thank u for ur reply..

I do really want to believe what the dr's are saying, I guess it is just my anxiety taking over.. It's just that when these episodes have occurred it's when my heart rate has been going fast, so now I'm scared to do exercise or anything in case they've missed something

[jenni89]

After my mom passed away, a year later I started getting these ectopic heartbeats. I would get the occasional flutter, but never runs of them that lasted days on end. I was 26 when they first started! I remember a few months prior, I had chest tightness that wasn't painful, it was just a strange heavy sensation. Went to the hospital, everything checked out fine. A few months go by, and boom! Major palpitation that sent my heart rate up and it was a horrible sensation that made me feel like I was literally dying. It felt like my heart was irregularly out of control. Had my brother call an ambulance, of course as soon as they arrived, I felt better. I went to the hospital anyway and they only caught an episode of SVT. Ran many tests and sent me on my way. I was traumatized by this event, that I was scared to do anything! Go to work, shower, drive, just being alone was scary! I remember one night at an amusement park, we had to leave because my heart was beating fast and coupled with ectopic beats. It was such a nightmare affecting my daily life! I remember going back to the doctor for ectopic, I felt like I was having them every fourth beat, my heart rate wasn't high or anything but I was still concerned. Dr listened to my heart, said sounds like PVCs. Did an EKG and they finally recorded what I was having! Simple PACs.

I actually had to see a psychologist and have been on Zoloft. It has helped me tremendously, I hardly get them anymore and when I do, I now can easily brush them off. I usually realize that stress has set them off and can pinpoint it whereas before, I automatically thought I would die. I've realized maybe it's just another quirk of getting older and try to take it easy, stress and anxiety can do a number on you physically.

I thought I'd share my story with you just so you know there are many people out there with the same story. It's comforting to know. I am now working two jobs, going to college, and doing things I never thought I'd be doing 2 years ago. Try and relax and have faith in your doctor's. They wouldn't let you go if they thought anything serious was going on.

[scared1998]

Hi jenni89.. So sorry to hear about ur mum passing.

Thank you for reply - it is reassuring/good to know other people go through similar things (although I wouldn't wish it on anyone)

I managed to see a private cardiologist last Friday who didn't seem at all concerned about these episodes - even though it makes my heart rate high along with ectopics. Although he does want me to go back for a stress test on Monday which I'm quite anxious about incase anything happens to me!!

I also realised that at the hospital the Dr's just referred to these skipped beats as ectopics and not specifically PVC/PAC, but I've realised for some reason I presumed they have been pvc's.. Which is why I've been so worried about them occurring when my heart rate increases, as I've heard that isn't a good sign.

I was wondering if any of you know whether PAC's can occur with increased heart rate?

[Rosanna]

I was told that they can, both pac's and pvc's can occur when the heart rate increases. Also some people get them more when they are relaxed and the heart rate goes low, both can happen.

I've had a stress test and I can reassure you that it's pretty easy if you can normally walk around ok and walk uphill (a medium hill) fairly easily. Also they can see the ecg the whole time so they can check how healthy your heart is moment to moment.